Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, June 17, 2013

To Find A Cure

When I was fresh out of high school, I was working in a center-based respite care program. Think daycare, but all the kids had significant disabilities. This was before the ADA went into affect and segregation of those with differences was allowed.

One of the children who came to our care facility several times per week was a boy I'll call Jack. He was 6 years old at the time.

Unable to sit unsupported, Jack spent most of his time laying down either on a beanbag chair (his favorite spot) or the big comfy couch we had in the room. Sitting in a wheelchair was extremely difficult for him, because his arms and legs would flail spastically in all directions. Holding him on my lap was physically exhausting for both of us. With Jack sitting around all day I felt bad he and nothing to do. He had to be bored! I used PVC pipe and build a big-kid sized play gym, of sorts. I hung various toys from it so he at least had something to look at, and several times throughout the day I would change out the toys based on whether he was lying on the couch or sitting in the beanbag. If only we'd had iPads then, or communication devices like kids have now!

Jack was a mostly happy kid, but he wasn't able to talk. He would occasionally get a sound out but nothing I could make sense of. Sometimes I would turn around to see a tear slowly making its way down his cheek.

My heart broke for Jack. You see, just a couple years before, Jack had been a happy, healthy 4 year old running around like any other kid. He had already learned how to ride a bike. He could almost tie his shoes. Although he probably had small symptoms earlier, when he was in Kindergarten his parents noticed them for the first time: the involuntary hand movements, facial twitches, then the stumbling.

Jack had Juvenile Huntington's Disease. Now, two years later, he sat in my classroom in a beanbag chair, arms and legs flailing uncontrollably, unable to say a single word, with a tear running down his cheek.

Jack continued to decline died just before his 8th birthday.

Juvenile Huntington's Disease is the same as Huntington's Disease but it is found in a person before the age of 20. It is an inherited genetic disease that causes progressive degeneration of nerve cells in the brain. If one of your parents has HD, you have a 50/50 chance of of developing Huntington's Disease. There is a predictive genetic test that can determine whether or not a person has the gene, but it cannot predict when the person will start developing symptoms. Some people who are at risk elect to not have the test done for a variety of reasons.

Meet Brayden

I have known Brayden's mom Jill and her husband Neil for somewhere around 25 years now. She and her husband Neil adopted Brayden when he was a baby. When he was two he was diagnosed with Autism. He has overcome a lot of things in his life. He is an amazing kid who has learned to function in a world where he's not always very comfortable.

Jill and Neil went on to adopt Rahni

Brayden's family has always maintained contact with his birth mom. A few years ago she was diagnosed with Huntington's Disease. Because she can no longer care for herself, she now lives in a group home for people living with HD.

From my friend Jill,
Brayden's birthmother, "M", has been diagnosed with HD and this puts Brayden at a 50% risk of also being diagnosed with HD. Sadly, he already has symptoms that look very much like HD. We have decided not to have him tested yet because once we test... there is no turning back. In our heart of hearts we know he has this devastating disease... but we aren't ready for that reality.  
HD is a 'family disease', not just because it is inherited, but because it profoundly affects the entire family... emotionally, socially and financially. The is no effective treatment or cure for HD... we are fighting against time :( 
A cure needs to be found... it needs to be found so Brayden can be assured that Huntington's disease won't rob him of his ability to LIVE a full LIFE.
Brayden has asked us if he has this or could have it... we simply answered him with, "Let mom and dad do the worrying about that" and for now.... that answer works for him. We hope to fi nd a cure before Brayden ever has to worry about it too :(  So for now... we don't talk about in front of Brayden and we don't really talk to him about it other than the fact that he knows his birthmother has it and she is going to die from the complications of it in the too near future.

We need a cure. Our son needs a cure. Please consider a tax deductible donation to help us with our goal... to help find a cure... to help our son to never have to have this be his reality.

To watch any family member, particularly your child, suffer through a slow and debilitating process such as JHD is something no parent wants to experience. If you would like to help find a cure, so kids like Brayden never have to face this as their reality, please visit Jill's fundraising page


livingwithreality said...

Thank you so much for sharing this Leah!!

mielkay said...

I worked in healthcare for twelve years. Besides ALS , Cancer, &Alzheimer's disease, Huntington's disease is heartwrenching. Our facility had 3 women with the disease, sister at different stages of the disease.

mielkay said...

I will pray for your friend because Huntington's disease is a cruel disease that doesn't discriminate.