Sunday, December 18, 2011

Kate's untested baby (Huntington’s disease and abortion – Part II)

Kate Sandbulte, a 20-year-old woman who lives in Iowa, long lived life to the fullest.

Her mother, Tara Hansen, recalled that Kate was “was always doing ten different things at one time.” For example, as Tara has written, Kate was a “very fast learner and was able to capture the hearts of anyone who crossed her path. She learned to walk at nine months of age and was speaking in full sentences by the time she was a year old. She grew into a feisty little girl.... She was very smart and was often found to be a peacemaker and could be found defending anyone who was hurt or sad” (click here to read more).

Kate loved painting, played basketball and the clarinet in junior high, and adored the 1960s, from Janis Joplin and heavy metal to peasant blouses and flare jeans. She helped raise three half-brothers.

“She’s always been the kind of kid who can roll with the punches,” Tara added with pride. “She never gets too upset about anything.”

Two big blows

However, Kate has faced some of the biggest blows that life could possibly level. For the past five years, Kate has had juvenile Huntington’s disease. Now she is pregnant with an unexpected child, who has a 50% chance of being gene-positive.

Although Kate could test the first trimester fetus for HD, she has decided not to. She plans to have her baby, even though both she and the child might not live beyond their mid-30s, and she and the baby’s father do not plan to marry. Fortunately, Kate can rely on her mother, who’s still in her 30s and has pledged to do all she can to take care of Kate and the child.

“She was on two forms of birth control, and it was not planned,” Tara told me in a Facebook message after I had seen her November 26 post announcing Kate’s pregnancy. “She always said that if she had HD, she didn’t want a baby because of the chance of passing it on. She cried for a week after reading the pregnancy test. She worried just as any mom would about the baby’s health and the effects of the (HD) meds she was on.”

“But then she saw the heartbeat of the baby,” Tara continued. “She cried tears of joy and is now taking better care of herself and now has hope for her baby. She said, ‘Perhaps this child can offer you comfort when I am gone, Mom.’ She knows God gives life for a reason. And no matter what – HD or not – this child will be loved, just as she is.”

Kate (left) and Tara at the HDSA national convention in Minneapolis in June (family photo)

Personal thoughts

Kate’s decision to risk passing on juvenile HD represents the other side of the coin of the wrenching decision made by the Wright family of Florida to abort their gene-positive, premature infant son and donate his brain for research towards treatments and a cure.

The first of this two-part series on HD and abortion – my article on Christina, Michael, and Timothy John Wright – provoked the most heated reaction by readers since the blog’s inception some seven years ago. (Click here to read the article and reader comments.)

Both families cited deep religious convictions as guideposts for their decisions. The Wrights are Catholic, and Kate and her family belong to a non-denominational Christian church that stresses love and the equality of all people.

As I interviewed and wrote about the two families, it stirred difficult memories of my wife’s and my decision to test our daughter in the womb in the winter of 1999-2000, just six months after I had tested positive. Luckily, our “miracle baby” tested negative. She is a thriving sixth grader now applying to college-prep schools.

I told the Wrights that I supported their decision.

I also support Kate’s decision. During my phone interview with Tara, I congratulated her and her family on the pregnancy and expressed my wishes for a healthy baby.

Kate can still talk but preferred that her mother answer my questions. HD has already compromised her ability to communicate clearly, Tara said. “I’m kind of like her safety net,” she added.

Along with the rest of the HD community, I sincerely hope Kate’s child is HD-free.

“Both stories need to be told,” Tara said. “They bring up a lot that people don’t want to talk about.”

Rejecting rigid views

My support for both families may appear contradictory to some with rigid or black-and-white views, but, as I pointed out in the previous article, “the disabling, ultimately deadly nature of HD further complicates” decision-making. As my wife put it, “Nobody knows for sure until they’re actually faced with the decision.”

Indeed, all of our stories reveal the tragedy of HD and touch on larger controversies about abortion, suicide, and mercy killing.

One participant in the debate over the Wrights subsequently recalled on Facebook the case of Carol Carr, a Georgia woman who in 2002 shot dead two sons who had been confined to a nursing home with late-stage HD. She was convicted of assisted suicide and released on parole two years later. (You can view a documentary about the Carr case by clicking here.) The Facebook commentator seemed to become less rigid in her critical view of the Wrights.

Dead at 33

Living in a small town, Tara and her ex-husband Jeff Sandbulte had Kate when they were, respectively, just 18 and 16. Jeff had told her that his parents had died. In reality, Jeff’s father was already in a nursing home with HD, Tara said. He would eventually die in his forties.

Jeff also had juvenile HD. “We started dating,” Tara said. “I got pregnant with Katelyn. I didn’t know a whole lot about the disease. I had never even heard of it.”

Tara didn’t perceive Jeff’s symptoms at the time, but in hindsight she now understands that he clearly had HD. “Knowing what I (now) know about HD, yes, he did show signs, like lack of impulse control, losing weight, sleeping a lot, and loss of temper,” she said.

Jeff and Tara married in 1993, but the relationship became rocky, and she left him a year later. According to Tara, Jeff went to prison for a number of years and had virtually no contact with Kate and Mikey, the couple’s second child. Mikey, in fact, only saw his dad once. The couple officially divorced in 1996.

In 2000 Tara, a veterinary technician, remarried to Mike Hansen, a cement truck driver. They have three children together, six-year old Landon, five-year-old Shawn, who has Asperger’s syndrome, and four-year-old, Gabe, who was premature but is now thriving. Tara also suffered a miscarriage of twins in 2007.

Jeff died in 2006 at the age of 33. Other members of the extended family have also fallen victim to HD, including a deceased cousin of Kate whose symptoms started at 14 and another cousin, now 30, who resides in a nursing home.

Struggling with risk

More than Kate, Mikey grew up worrying about HD, because of his biological father’s situation. She showed more concern for him than for herself.

“She was very supportive of him as he was going through it,” Tara said. “Her deepest fear was that Mikey would have it. He was sure he had it because his biological father had it.”

Even Mikey’s doctors thought they saw signs of the disease. (Untested, at-risk people often act out symptoms, as do gene-positive, asymptomatic people like me.)

Perhaps because he saw his future compromised, Mikey hung out with people who were bad influences and letting his grades slip. After he became addicted to pain killers, Mikey had to enter a treatment program, Tara said.

An HD-free brother

HD testing centers usually advise against testing minors for HD because of the severe psychological impact of the potentially devastating information. However, in Mikey’s case, the family decided to test him in July 2009, when he was 16, because the prospect of HD had subjected him to enormous psychological pressures.

However, the medical profession has not fully grappled with the need to provide genetic testing information with sensitivity and competence. As I pointed out in the previous article, the Wrights received their baby’s test results in an unprofessional manner. Mikey suffered a similar fate.

A staffer from the doctor’s office called the family and asked for “Mike,” not identifying him by his last name. But it was not Mikey Sandbulte who answered the phone, but Mike Hansen. He was abruptly told his test results were “negative. If you have any questions, please call.” The staffer then hung up.

“They didn’t even make sure they had the right person on the line,” Tara said with indignation, noting that the proper procedure would have involved visiting the testing center and meeting with a geneticist and social worker so that the information – even happy information like a negative test – could be processed in person. The social worker became “irate” when she learned what happened, Tara added.

Luckily, Mikey was still at the drug rehab clinic. The family took his girlfriend Andrea to the clinic so that she could break the good news.

“He hit the ground on his knees and kept saying, ‘Oh, my God!’ He said, ‘I can’t believe it.’ It was like this big weight lifted off his shoulders. His whole demeanor changed – everything.”

Today, free of the spectre of HD, Mikey not only went through rehab successfully but has remained drug-free.

Kate’s onset

Like her brother, Kate also showed symptoms starting at the age of 15. In her case, she wasn’t acting out.

“That’s when her personality changed,” said Tara. “When she turned 16, she went through a terrible weight loss. She was at 130, and she went down to 98 pounds in a three-month period. We as parents are thinking, ‘She has an eating disorder.’ She would eat all the time.”

Her family also noticed periodic tremors in her hands.

HD patients typically lose weight, as did Kate. Scientists suspect the cause stems from energy shortages in the body’s cells caused by the defective huntingtin gene, as well as chorea, the constant shaking and dancelike movements most patients develop.

Kate (family photo)

Kate struggled in high school and ended up attending an alternative school. She had difficulty remembering things, too. “Hindsight is 20-20,” Tara recalled, “but at the time we thought Kate was just an airhead.”

“I look back now and I can remember struggling in school and being angry that I could not ‘get it,’” Kate wrote in her blog. “We had meetings with my teachers and I would tell everyone I was trying. I was sleeping a lot and skipping school. I was trying but for some reason it just would not stay with me. I know I was mad about that. I got mad at Mom and Dad for not understanding. Up to this point I had been an honor role student in all but math.”

Still the same person

Just a few months after Mikey’s genetic test, Kate and her family braced themselves for another test.

In October 2009, at the age of 18, Kate received her results, which confirmed the symptoms she had been showing and pointed to an ominous fate. Whereas a normal huntingtin gene has only ten to 29 CAG repeats, Kate’s has 57, a number that most surely will doom her to an early death like her father, grandfather, and other relatives.

However, Kate took the test result in stride.

“‘Hmm. Thanks.’ That is all she said,” Tara recalled. “She said, ‘It doesn’t change anything. I’m still the same person I was yesterday.’ She was working part-time at a local gas station. She went into work. She said that her test had come back positive. They said to take off and go home to be with her family.”

As for the family’s reaction, “we followed Kate’s philosophy,” Tara added.

Experiencing life

It wasn’t that easy, however. Two weeks after her test, Kate lost her job because of her difficulties with memory.

Despite the progression of the disease, Kate graduated from high school.

“She walked across the stage and got her diploma,” Tara said with pride.

After high school, the family helped Kate move into her own apartment so that, in Tara’s words, she could “experience life the best she could” before the symptoms worsened. To avoid the chance of an accident resulting from the loss of coordination typical in HD, Kate started driving less. Yet she still enjoyed being a “typical young adult,” spending time with friends.

Shawn (left), Gabe, and Kate (family photo)

Kate and her family then moved into another home equipped with features that would facilitate future caregiving needs, including a large bathroom and wheelchair accessibility.

With the help of Iowa’s Center of Excellence for Family Services and Research of the Huntington’s Disease Society of America (HDSA), the family obtained Social Security disability benefits for Kate. She now receives a monthly payment of $426. Medicare and Medicaid cover her medical bills.

Failed birth control

At a town celebration, Kate met a 29-year-old man named Billy. They started dating.

“The average person wouldn’t know that she’s disabled,” Tara said, explaining how it was natural for Kate to relate to men. “She has chorea and twitches, and she’s terribly forgetful. Other than that, she’s just a typical 20-year-old kid.”

To avoid pregnancy, Kate took Depo-Provera, a birth-control shot. She also took a low dose of a birth control pill in order to help reduce cramping and regulate her menstrual cycle.

Then both Kate and her mother took note of a missed period.

“I pulled into Walgreen’s and got a pregnancy test as a joke,” said Tara. “I didn’t think she was going to take it. She came out of the bathroom. She said, ‘It’s positive,’ and she started crying. I gave her a hug, and we just sat there.”

Kate’s baby is due on July 4, 2012.

‘In God’s hands’

Kate, Billy, and Tara met with a genetic counselor. Tara mainly stayed “in the background,” letting the young couple experience the happiness and worries of first-time parents, she said. The counselor informed them of the 50-50 chance that the baby would inherit the HD gene, but he did not advocate a course of action. The counselor said there was “no right or wrong answer,” Tara recounted.

Kate made a firm decision against both testing and an abortion.

“Even if she did test the baby, she wouldn’t terminate the pregnancy,” said Tara. “It was a struggle at first, after learning of the pregnancy. Once she saw the heartbeat, it was okay.”

Tara reviewed the options with her daughter, including abortion. “I don’t hide things from her,” Tara said. “I tell her that with juvenile HD, it could come on stronger and earlier in the baby.” Kate told her mother she was being “negative,” but Tara responded by emphasizing that she was simply laying out the facts.

“We just leave it in God’s hands,” she continued. “I can’t control HD. We all wish we could, but we can’t. In dealing with my little boy with autism (Asperger’s syndrome), people ask me if I knew, would I terminate my pregnancy. I say no.”

As for how the family will deal with so many potential caregiving burdens, Tara said that “we trust in God. The baby may not have HD. Shawn is high-function and our goal is for him to be a productive member of society. We will deal with the issues as they come up.”

Avoiding another pregnancy

After the baby is delivered, Kate and her family will take decisive action to avoid a future pregnancy.

“Kate is going to be sterilized,” Tara said, explaining that her daughter will undergo a tubal ligation, a procedure Tara also had after her last child’s birth. “She asked for this, and the doctor and I both support her choice – and even agree with it.”

Tara stressed that Kate initiated this plan and was not manipulated in any way. In fact, before Kate got pregnant, the mother and daughter had already discussed this possibility, although Kate declined at the time to have the procedure.

“It’s a choice that she’s making, because of the birth-control failure,” Tara explained. “She doesn’t want to go through the stress again of worrying about another baby."

I wanted to know if, in Tara’s opinion, sterilization violated God’s will in any way. She didn't think so. On this point she agreed with the Wrights, who believe that medical technology and procedures are “instruments” of God.

‘Preparing for war, praying for peace’

I wanted to explore more deeply the risk Kate is taking by not testing the baby. I asked Tara: wouldn’t a negative test put your minds at ease? And, without an abortion, wouldn’t a positive test help Kate and the family provide the best care possible for a diseased child or teenager?

“We did talk about this,” Tara responded. “Kate asked, ‘What would you do to prepare? What would the father do to prepare?’ He said: learn more about HD.”

Tara met with Billy and his mother to discuss the pregnancy and plans for raising the baby, especially because he and Kate will not marry.

“We as a family group need to be able to support that child,” Tara told me. “I said, ‘It doesn’t make a difference if it has HD or not.’ The end result of caring for the child and loving the child is going to be the same.”

In August, Tara obtained legal guardianship and conservatorship over Kate. These legal powers will also allow her to make decisions for the baby.

“In the end, I could force the issue if I wanted to, as her guardian,” said Tara. “But I’m going to respect her. Katelyn had 18 beautiful years without knowing (about HD). Life was what it was. Even now, she doesn’t think every day, ‘Oh, I have Huntington’s.’ That’s the way she wants her child to be raised.”

She summed up their strategy with these words: “We prepare for war, but we pray for peace. We prepare for the worst, but pray for the best.”

A plea for togetherness

After posting the news of Kate’s pregnancy, the family saw messages of support, but also what they termed “unkind remarks.”

For example, the Wrights criticized Kate for not testing the fetus and exploring their options.

Tara believed that the Wrights were “judging Kate.” According to her, they thought Kate was “selfish and hateful to carry a baby to term without getting it tested, that Kate had no right to give birth to a child that may or may not carry the HD gene.

“Kate was angered and hurt, as I was, from the post. When the other lady terminated her baby at 20 weeks, we supported her. We offered our prayers and love.”

When the Wrights received harsh criticism for their decision, Kate and her mother still stood by them. “I don’t agree with their choice but I ask our HD family to show the Wrights the same love you do to those of us who have a child or children living with JHD or HD,” the mother and daughter wrote.

Facing such extremely difficult situations, Tara told me, each family should make its own decision. She felt sad that “people showed anger and almost hatred toward somebody, especially when we’re fighting this horrible disease. The disease affects us all, and we should stick together.”

“In the end, it’s nobody’s business,” she said. “At the end of the day, it is up to the families, and each family has their own set of beliefs and morals. It is really up to the families to make the decisions for their loved ones, with or without society’s okay.

“I just want people to know: there are other options (other than testing and abortion). Do I understand where the Wrights come from? No. But I don’t judge them.”

A special gift from Landon

Kate, Tara, and the rest of the Hansen family are now turning their attention to welcoming a new member. Tara reports that Kate is doing well, although she consults with an obstetrician-gynecologist specializing in high-risk births.

“We’re planning on Kate doing what she can and us helping out where we can,” said Tara of the family’s post-birth plans.

They also hope to raise awareness about the need to cure HD in order to end the suffering endured by Kate, the Wrights, and the thousands of families afflicted by the disease.

Landon, the "Button Boy Fighting Juvenile Huntington's" (family photo)

Yesterday an early Christmas gift arrived at my home from six-year-old Landon. Landon makes HD bracelets and key chains. He sells them, as well as buttons promoting the HD movement. Last June, he even joined Kate and Tara at the annual HDSA convention in Minneapolis. Since then he’s raised $1,500 for the cause.

Tara told me that Landon is determined that his dollars “will find the cure.”

Landon sent my family a box with a couple bracelets, about a dozen buttons, family photos, and pamphlets and business cards for his work as the “Button Boy Fighting Juvenile Huntington’s Disease.” (You can contact Landon’s family at tanyon_24[at] To donate, make checks payable to Landon Hansen and mail to 102 1st Avenue, Doon, IA 51235. All proceeds go to juvenile HD research at the University of Iowa.)

My daughter and I inspected the package’s contents.

“How old is he?” she asked incredulously.

“He’s six,” I responded.

She selected for herself a mini-button with the words “I Love Someone with Huntington’s Disease.”

“We have to spread the word,” Landon told his mother about his gift to us. “The more people understand, the better.”

Sunday, December 11, 2011

An angel fighting for the cure (Huntington’s disease and abortion – Part I)

Lying in a hospital birthing room, Christina Wright held her premature infant son Timothy John awhile in her arms and, after he died, handed his tiny body over for research that might help save her husband and thousands of others from Huntington’s disease.

On August 28, 2011, Timothy became an “HD angel,” yet another mourned but deeply loved victim of this killer brain disease. His brain was donated to a tissue bank at the University of British Columbia’s renowned research program on Huntington’s.

After the fetus tested positive for the abnormal gene that causes Huntington’s, Christina and her husband Michael prayed at their local church in Coral Springs, FL, and then decided to abort their child in the 22nd week of the pregnancy. Hoping all along that they might carry the baby to term, they had already given him a name.

For more than ten years, Michael has helped care for his 54-year-old mother Gail Suvino, now residing in a nursing home with late-stage HD. In October 2010 Michael himself tested positive for the disease. He is 34, and he worries constantly about when his own symptoms will start.

Christina and Michael Wright (family photo)

The ‘toughest decision’

Christina and Michael could not bear the thought of their son facing the threat of a life burdened with severe disabilities and ultimately cut short by years, if not decades.

“It was very hard for me,” Christina said with great emotion in a phone interview on December 8. “I didn’t know that he was going to be born alive. He was strong and a fighter and wanted to live, and that breaks our hearts.”

“He looked just like me when he was born,” said Michael, who had stood by Christina during the birth. “He had my big feet and chicken legs.”

“This was the toughest decision we ever had to make,” he continued. “I bring it up every day. A lot of people don’t know what this disease does to a family. It does massive damage to a family.”

A birth with a research goal

With medical assistance, a baby delivered at 22 weeks would have a 10 percent chance of survival, explained Christina, a pediatric nurse. Because this was an abortion, the medical team did not intervene to save Timothy. He died of heart and lung failure.

“I did not have a clinical abortion,” Christina said, noting that in a standard abortion the mother is put under anesthesia and the fetus terminated and removed in pieces with the help of forceps. Under those circumstances, the brain could not have been used for research.

“I went through the birth to be able to donate the brain,” Christina continued. “The doctors did insert pills into my cervix to induce my labor. I pushed him out. I delivered my son with the purpose of fighting this disease.

With great pain in her voice, Christina spoke of how she will miss her son.

“No one wants to hurt their child,” she said. “We loved him so much. We always will. Even if we have ten children, we’re always going to be missing one. He was our son and always will be. We have pictures of him. We have his ashes in an urn. He will live in our hearts forever.

“I feel like he’s fighting in a different place,” she added. “He’s my husband’s angel. My son can help save my husband. He’s a warrior. I couldn’t be more proud as a mom, to know that my son helped find a cure to beat this. Some moms want their children to be a doctor or a lawyer. Mine might help find the cure for a disease that destroys families.”

Painful memories of another test

When I read Christina’s Facebook posting about Timothy on August 29, I felt terrible. I decided immediately that I would soon write an article for this blog about their plight. This is the first of two articles about HD and abortion.

Never an easy decision, abortion is even tougher for people of faith like the Wrights and a pediatric nurse like Christina. The disabling, ultimately deadly nature of HD further complicates that decision.

Interviewing the Wrights was one of the most difficult moments in my 13-plus years as an HD activist.

Listening to them sent my mind reeling back to the winter of 1999-2000, when my wife and I tested our own baby for HD in the womb six months after I had tested positive for HD. As I told the Wrights, their experience closely resembled ours – except for the all-important fact that our daughter tested negative.

As I pictured Christina holding Timothy, I imagined what it would have been like if our daughter had died in her mother’s arms immediately after birth.

I can’t find the words to describe the pain I felt. I shared our family’s story with Christina and Michael. I told them that I supported their decision and thanked them for donating Timothy’s brain for such a worthy cause. “I appreciate that,” Christina said.

In recounting the interview to my wife, I explained how the Wrights had oscillated between continuing and terminating the pregnancy. I then recalled our own situation. “Nobody knows for sure until they’re actually faced with the decision,” my wife said. I agreed.

An HD-free child

I am immensely relieved that our “miracle baby” is HD-free.

On several evenings this past week she and I happened to watch a recording of The Heart of Christmas, a new feature film based on the story of Dax Locke, a toddler whose battle against a rare form of leukemia mobilized the community to support his family and celebrate Christmas early so that he could enjoy it one more time before he died in 2009. Thinking of the Wrights, I felt so privileged to share these moments with her.

Last Saturday morning, after we accompanied her to a testing center for a private school entrance exam, I reflected on her progress in life and her immense potential.

The most powerful drive in life – more than the sex drive or anything else – is the need to nurture and protect a child. No calamity wounds a family more than the death of a child.

An imperfect situation

The Wrights’ story reveals the tragedy of HD, the wrenching decisions it forces upon families, and the imperfect conditions under which they must make and carry out those decisions.

After meeting through and dating awhile, Christina and Michael married on St. Patrick’s Day of this year. Michael, a beverage merchandiser who had to quit college in part to help care for his mother, had revealed to Christina that he had tested positive for HD but so far had not symptoms. Christina witnessed the tough reality of HD by meeting Gail.

“A lot of people would run the other way,” Michael said. “She really loves me.”

Christina, now 38, had been told by doctors that she couldn’t get pregnant because of an irregular menstrual cycle since the age of 14 and, later, ten years of failed attempts to conceive in a prior relationship. She and Michael didn’t use contraceptives.

The pregnancy caught the Wrights completely by surprise. Thus they hadn’t had the opportunity to seek genetic counseling, nor could they resort to PGD (preimplantation genetic diagnosis), which would have allowed them to choose embryos without HD for implantation into her uterus.

Pondering the results

An amniocentesis was done on the baby at sixteen and a half weeks, the earliest possible moment. But the results of the HD test took three more weeks to arrive.

Michael’s abnormal gene has 42 CAG repeats, whereas a normal huntingtin gene has only ten to 29. Those extra repeats cause the disease. Timothy had 40 repeats. Statistically speaking, Michael, who is 34, will probably develop symptoms sometime in his forties or fifties. Someone with 40 repeats might develop them a bit later, although, according to Michael, Gail’s symptoms started around the age of 36 or 37, and she has only 36 repeats.

Although they are finding more clues, scientists still don’t know exactly how and when the disease starts. Anybody with 40 repeats or more will definitely develop symptoms at some point.

The Wrights had learned that the child of a gene-positive man has a much greater chance of developing juvenile Huntington’s disease, which can start as early as the toddler years. But that’s because the father can often pass on more repeats, whereas a mother usually passes on her number. In this case, Timothy actually had fewer repeats.

“I almost don’t want to know that, if that’s the case,” Christina told me after I explained my understanding of that connection between repeats and juvenile HD. “We very much wanted our baby. We feel that we gave him back to God, especially because we’re Catholic.”

‘We were bonding’

The process of learning about their child’s fate was awkward. The Wrights received the results of Timothy’s HD test from an on-call obstetrician, rather than from their regular doctor, who was out of town. No social workers or geneticists were on hand to help clarify the information, and it was the first time the obstetrician had ever advised a patient on an amniocentesis involving HD.

The Wrights faced additional time pressure because in Florida a fetus at 24 weeks is considered viable, Christina explained. Had Timothy reached that age, the couple would have had to travel to another state for an abortion.

“We were both crying and both devastated,” she said of the impact the news of Timothy’s gene-positive result. “It was very difficult for us. I didn’t think God would give us more than we could handle, and so I wanted to have our son.

“It wasn’t just a pregnancy at that point. It was our son. We saw his picture on the ultrasound. I was gaining weight. I could feel him move. We were bonding with him. We started picking names. It was just very hard.”

Medical advice

But the obstetrician told her that she “was being selfish and not considering the life of the child” if she went through with the pregnancy, she said.

Other doctors that the Wrights knew at the University of Florida in Gainesville – where Michael travels regularly to participate in an HD research study – couldn’t tell the couple when the symptoms would occur and how bad they might be.

“We wanted to consult with them,” Christina said, explaining that they spoke with these physicians via cell phone. “Their opinion meant more than an obstetrician’s. They agreed that it would be better not to have the child.”

She added that these doctors did not mention the relationship between the CAG repeats and the age of onset.

All of the doctors led the Wrights to conclude that they would have a “sick baby,” Christina said.

Timothy’s purpose

Sitting in a pew at their church, the Wrights prayed and cried for more than an hour. The parish priest appeared and asked what was wrong, and, without mentioning HD or a genetic test, the couple explained that they had gotten “bad news” at the doctor’s office and would have to deliver their child prematurely.

“He came into our room (at the hospital) and said a prayer and held our son and put some holy water on him and christened (baptized) him,” Christina said, adding that Timothy was probably dead at that point. “It was very touching for us.”

Timothy lived for about 90 minutes. The medical personnel needed to get his brain on dry ice in 30 or so minutes, and they shipped it to the University of British Columbia’s Huntington Disease BioBank. There scientists study tissue samples to understand “the way DNA changes associated with Huntington’s disease affect the actual physical characteristics and proteins of the brain and tissues.”

“That was one thing we were adamant about,” Christina said. “If we were going to lose our son, we wanted something to come from this.

“We’re not ashamed of what we did. We just want to help find a cure.”

The couple wants to share their story to raise awareness about Huntington’s and support the quest for a cure not just of HD, but other devastating neurological conditions such as Alzheimer’s and Parkinson’s, Michael added.

Timothy is now part of that quest.

“We felt that was his purpose,” Christina said.

Opinions on testing

The Wrights still want a child and are now saving to afford PGD, which can cost upwards of $10,000 and even twice that amount, depending on the circumstances. Their insurance doesn’t cover it.

They believe that PGD is “the responsible thing to do,” Christina said. She strongly disagrees with families that, when pregnant, choose not to test for HD via amniocentesis.

“With all that science has to offer, it’s (also) the responsible thing to do,” she said.

“Just think about the long-term effects if they don’t do the right thing,” Michael said. In using the latest scientific techniques, he and Christina aren’t seeking the “perfect baby, but a healthy baby,” he added. “You owe it to your family” to assure healthy genes, he said.

“God gives us these vessels, these instruments, this technology to guide us and help us along, especially in the medical field,” Michael said. “Don’t go through it blind-folded.”

More HD families need to “come out of the closet,” Michael continued. HD is “not something to be ashamed of. People look at Mom and think it’s a stroke. It hurts."

Learning from the Wrights’ example

In concluding the interview, I told Michael that he and I were “brothers” in the fight to stay healthy and support the cause for the cure. I told Christina that she was my “sister” in the cause.

I’ve been meditating on Timothy and his parents. I pray that others don’t have to face their terrible predicament, although many surely will until the medical community achieves greater awareness of the genetics of HD.

Ultimately, effective treatments or a cure would liberate people from this predicament.

We can learn much from Timothy John Wright. His parents gave us his brain for research – to serve the greater, common good. Understanding the bigger picture, Christina and Michael committed the ultimate act of human solidarity.

We in the HD community also need to see the greater good. Whenever possible, we need to participate in research. To do so, we must exit the terrible “HD closet.” I myself remained pseudonymous, in the closet until 2010, and in February of this year I came out by delivering the keynote speech to HD specialists from around the world gathered at a key conference in Palm Springs.

As Michael pointed out, we need to rise above the difficult feelings surrounding HD and gain heart from the fact that our participation in the quest for treatments and a cure is helping to create the dawn of a new era. Along with the scientists, we are taking a quantum leap in the study of the brain. We are the pioneers pointing the way to better brain health. We are doing something profoundly good and important.

From suffering to progress for all

In the past, many people – including my own family – have viewed HD as a matter of suffering. But today, with scientific progress, HD is about the human quest for a longer and more fulfilling life for all.

In the Bible, Abraham was willing to sacrifice his own son in a sign of complete commitment and love. Our collective human sorrow is captured In Michelangelo’s Pietà, with Mary holding the body of her son Jesus after his crucifixion.

Michelangelo's Pietà, in St. Peter's Basilica in Rome

The mini-urn containing Timothy's ashes (family photo)

We in the HD community are all Timothy John Wrights in our mothers’ arms.

Indeed, we in the HD community endure great suffering. “You think, ‘God can’t be that cruel,’” Michael said.

But, like the Wrights, none of us should feel ashamed. This community has lots of love – and it shows it just as the Wrights have done.

(The second part of this series will tell the story of Katelyn Sandbulte, a 20-year-old juvenile Huntington’s disease patient in the first trimester of pregnancy.... At this special time of year, please remember to donate to the Huntington’s Disease Society of America.)