Help with Henry's medical expenses

Hi, my name is Linda. I'm Kyle's mom and I'm starting this fundraiser to help Kyle and Lyndsay to pay for the medical bills for their son Henry. Here's their story:

Kyle and Lyndsay dream of a traditional family with many kids, Lyndsay a stay-at-home mom while Kyle works to support the family. They dream of having some land with a few animals and a garden, a small homestead. This dream is hard to come by in today’s world, but they are making it happen. They moved to New England with hopes to be able to better afford a home and start their family. They have been saving diligently to move to a larger lot and a bigger home. A two bedroom house only goes so far when you want four kids.

They have two children already and are planning more. Kenneth, the oldest at nearly two years old, is a bundle of energy and has personality to spare. Such a happy child, always bringing a smile to every person he meets. His brother Henry was born in May, a spitting image of his older brother at birth, we could not tell the pictures apart!

In October we started to notice that Henry was not really growing like he should, he was very small and seemed to be regressing in his cognitive development. After a trip to visit family in California this fall, Kyle and Lyndsay took Henry to see his pediatrician. She immediately sent them to the hospital, as Henry had not only not been growing, he actually lost some weight since his 4 month checkup.

It was a six day stay in the hospital the week of Thanksgiving. Lyndsay stayed at the hospital with Henry while Kyle and I took care of Kenneth and ran errands; bringing Lyndsay clothes and spending hours at the hospital holding Henry. Henry is in almost constant pain. The only way to calm him is to hold him gently bouncing until he falls to sleep. Any attempt to lay him down, or even switch positions once he was calm, resulted in excruciating pain and screaming.

After 4 nights in the hospital and countless tests, Kyle and Lyndsay got the results of the blood and MRI tests that confirmed Krabbe Disease. Krabbe is a degenerative neurological genetic disease that is caused by both parents having the recessive gene. It affects Henry's nervous system and effectively results in total regression of any and all cognitive development. It’s as though he’s reverted back to infancy even though he’s 6 months old. The early signs of smiling, eye contact, exploratory hand movements, etc. have all disappeared. His regression will continue, and it’s expected he will not live to see his second birthday.

The chances of having a baby with Krabbe are 1 in 100K; it is very rare. But with both parents being carriers, there is a 25% chance that any of Kyle and Lyndsay’s future children will have Krabbe. We are having Kenneth tested to make sure he does not have it, although to-date there have been no symptoms or indications that he’s got it as well, thank God.

At this point there is nothing we can do for Henry, there is no cure and because of his age and the progression of the disease, there is nothing we can do except try to keep him as comfortable as possible until he’s ready to leave this earth.

Kyle and Lyndsay are getting by and working hard to make their dream of four kids with a bit of land a reality. Six nights in the hospital, numerous test, etc. means a very large hospital bill. Henry has also had a surgery to put a permanent feeding tube in his abdomen. We expect that over the coming months, Henry will need more care, possible additional surgeries, many doctor visits, and medications to help keep him comfortable.

Kyle and Lyndsay are not ones to ask for help. For all of us this is a devastating diagnosis and I know that at least for me, I feel completely helpless. Many of you have asked how you can help and right now some financial assistance would relieve Kyle and Lyndsay of one more stressor so they can focus on caring for Henry and Kenneth.

We thank you for your prayers, your thoughts, your positive energy, your well wishes, your kind words, and of course, for any financial assistance you can provide. All funds raised through this GoFundMe campaign will go to pay Henry’s hospital bills, doctor bills, pharmacy bills, and eventually, his funeral.