Here is a bit of their story:
“I wish I had better news.”
Drew admits he had a tough time listening after she said those words. Still, when a doctor speaks from the Neurological Orthopaedic and Rheumatological Institute you listen, because they usually have something important to say, and this day was no exception. This was the day when Drew would find out
He already knew his mother had Huntington’s Disease, a terminal disease that is passed down from one generation to the next. It isn’t always passed down - there is a 50/50 chance. The news that his mother has the disease already hit him in the gut just a couple of weeks before. The question now was whether or not the disease would claim his life eventually, or whether he had dodged the bullet.
He sat in the doctor's office today to find out whether or not the news from the test he took a week before would be good news or bad news.
It was not good.
Barring some miracle of modern medicine, Huntington’s disease will eventually win the day. As good as medicine is, we can detect the disease, we can treat some of the symptoms, but we can not cure it, and when it shows up it is always terminal.
It isn't the fact Huntington's disease is terminal this is the worst of it - it is how the disease takes hold. Often described as having Parkinson's, Alzeimer's and ALS all at once, Huntington's robs the individual of the ability to function. It is a slow, often painful death.
But Drew’s distress wasn’t over himself. Of course he was concerned – no one wants to go through the physical symptoms of Huntington’s. But Drew had just recently turned the page into a new chapter of his life. A marriage only a few years young, a new home, and a beautiful baby girl who was at this point only a few weeks old. Everyone has hurtles to overcome, and Drew’s young family was no exception.
The truth is that the past few years had been an emotional roller coaster. Only a few months after the young couple purchased their new home it was ravaged by an accidental fire, and it was nearly a year before they were able to move back in. A few years of trying to start a new family proved fruitless. Doctors told them news that they would not be able to have a biological child of their own without medical intervention.
Most people would probably just give up, but they knew starting a family would mean sacrifice. They began the expensive and laborious process of in vitro fertilization (IVF).
Major expense and a dozen medical procedures later and despair was met with joy when they found out the news:
Kaitlin was pregnant.
But little Lucinda Campbell was on a different time schedule than the doctors, nurses and the family, and insisted on arriving to the scene dangerously early, at a time when many infants are unable to breathe without assistance due to underdeveloped lungs.
She was born on September 17, 2015 and weighed a miniscule 3 pounds and 15 ounces and smaller than a football, but she was a fighter, and her little lungs did their job just fine.
This photo of one of the happiest moment's of Kaitlin and Drew's life was on that day - just weeks before Drew found out from his sister that his mom had been diagnosed with Huntington’s disease, and that he might have it, too - and that meant that his children might, too.
Drew’s sadness over the news from the doctor was grief over the fact that his wife, Kaitlin, and his daughter Lucy would have to suffer through it as well.
News like this changes a person’s life.
It changes a person’s plans.
It changes hopes and dreams.
In the past 2 years, together with Kaitlin and their friends, Drew has raised thousands through Huntington's Disease Society of America to help doctors find a cure for this deadly disease.
Looking at their lives now, and their beautiful daughter, Drew and Kaitlin have decided to continue with their plan to have another child.
When a person goes through IVF, a number of fertilized eggs are formed and then surgically implanted into the mother’s uterus. Then it is a waiting game to see if any of the eggs continue to develop. In the case of Drew and Kaitlin, one did, leaving one more ready and viable. When this happens, the egg can be frozen in such a way as to remain viable for future pregnancies. It isn’t a sure bet, but it is a start that can eliminate months of procedures.
Now, though, there is a new variable.
Because Huntington’s Disease is genetic, Kaitlin and Drew want to be sure that any viable eggs do not have the terrible disease before proceeding. The law prohibits them from having Lucy tested, though she may indeed have Huntington's - Lucy will have to make that decision herself after she turns eighteen.
But they can do something about their future children.
This is where they need your help.
The cost to test the eggs for Huntington's is very expensive – indeed it would be considered cost prohibitive to most. It isn’t covered by insurance. But Kait and Drew believe that it would be irresponsible to continue without testing. If scientific advances in medicine allow them to prevent another person from having this disease, if they have the ability through this test to effectively stop the disease from taking hold in future generations, then why not do it? Why not give the gift of a Huntington’s free life to the future generations of Campbells?
The test is the same cost to test a number of eggs if the test is performed at the same time, so Drew and Kaitlin have opted to go through another round of procedures to have more fertilized eggs formed so that they can all be tested at once. This will probably be a one-time shot because of the cost, so upping the probability is of paramount importance.
This decision to proceed was not one that they have come to lightly. Drew and Kaitlin have considered other options, looked into the possibility of adoption and fostering a child, and thought a great deal on whether or not having another was a good idea. Despite its considerable cost, this still remains the most cost-effective option moving forward.
Lucy is a joy that lights up the world of all those who she meets. Kaitlin and Drew love their baby girl more than anything else in the world. Lucy, Kaitlin and Drew are surrounded with a loving extended family of brother's and sisters, aunts uncles, parents and grandparents - a wonderful and loving environment for any child to grow up in. Lucy is everything to them.
But this isn’t a question of whether or not they are satisfied with just one child, rather, it is a hope to share love with another.
Please consider donating to help cover the costs of this needed procedure.
The testing procedure to determine if Huntington's Disease is present:
Clinic/Hospital Portion of the IVF treatment (This is after a significant deduction of funds saved):
Various required medications:
Total Expected Cost with added hospital expenses:
To find out more about Huntington's Disease, including signs, symptoms and treatment, or to find out how you can help find a cure, go to:
The Huntington's Disease Society of America
- Kim Prescott
- Beau Dansizen
- Melissa Duong
- Manoosh Crook
Organizer and beneficiary
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