BOISE, Idaho — Piper Morse and her son Grayson have been dreaming of a special place where they could get outside and enjoy time together. Make-a-Wish Idaho was able to step in and make that dream a reality.
"We wanted to have our own little oasis," Piper said. "So that we could enjoy being outside and not have to take him so many places where he could get sick and get a cold."
Six-year-old Grayson has a rare, debilitating disease that can make getting outside more difficult. It is called Krabbe disease, which is a rare form of leukodystrophy. But, when he was born, there was no sign of the disease at first.
"Grayson was born perfectly healthy," Piper said. "He was hitting all his milestones, we didn't know anything was wrong."
When Grayson was 6 months old, his mom started to notice something was not quite right.
"We admitted him to the hospital several times. We couldn't figure out what was wrong," Piper said. "Then he started tightening his hands like this, he was getting very, very irritable. He had an MRI and we found out he had a very rare disease called Krabbe leukodystrophy."
Piper was overwhelmed by what that meant for her baby boy. She had never heard of Krabbe disease. She quickly learned it is a severe neurological condition, and that she and Grayson's father were genetic carriers. Krabbe is part of a group of leukodystrophies, which result from the loss of myelin in the nervous system. Myelin is the protective covering around nerve cells that ensures the transmission of nerve signals. The most common form of Krabbe disease, usually begins before a year of age, just like it did for Grayson. Symptoms include irritability, muscle weakness, and feeding difficulties. He had all those symptoms.
Doctors told her Grayson would continue to lose his ability to move, and only live about two years.
"What happens is it's a neurological disease. They lose the ability to eat, to move; their respiratory, their heart, all their functions slowly lose function," Piper said.
Grayson's family fought for the only treatment available that could extend his life. A costly stem cell transplant. Their insurance company finally agreed to cover it.
"We flew to Pittsburg and he got a stem cell transplant, that transplant wasn't a cure, but it did prolong his life and it did give him a better quality of life," Piper said.
Grayson is now six, and he is doing things his mom never thought would be possible.
"He's riding a bike, he's going to school, the things that most people take for granted are miracles to me," Piper said. "Every day is a blessing, every moment is a blessing, every smile, every cuddle. We're just giving him the best life that we can, and he just brings the most joy to all of our lives, and everybody that he meets."
Piper said looking back, she wishes Grayson could have had the transplant sooner, before developing symptoms.
"If you are screened at birth, your child can have the transplant early and your child can have a normal to semi-normal life; unfortunately since Idaho doesn't screen at birth we didn't know," Piper said. "I would love to get in front of the newborn screening board for Idaho."
Grayson's mom also wants to raise awareness about children in Idaho with leukodystrophy, and made a lot of progress toward that goal this past September.
"We just reached out to Governor Little and asked him to proclaim that it's leukodystrophy month, and he sent me the proclamation. It was that easy, and it was amazing and so exciting!" Piper said. "It acknowledges these families, it acknowledges their children, it acknowledges what they have been through on their journey!"
Part of the journey for Grayson and his mom, has been receiving a special gift from Make-a-Wish Idaho. A new backyard patio.
"They made our wish, our dreams, come true with this amazing oasis outside," Piper said. "There's misters and there's a fire pit to help him when he gets cold as it's cooling down. It is so nice to be out here, the weather is amazing and we can just lounge on the couch and he can watch his show. I can hold him in the swing or he can just hang out in his chair and we just absolutely love it."
Piper has no idea how long she has with her special little boy, but she is cherishing each day. She is hoping for many more years in her backyard oasis with Grayson.
"He's the best thing that has ever happened to me and my family, and we just love him so much," said Piper through tears.
She is now more determined than ever to help other families like hers in the Treasure Valley. She wants to get Krabbe disease on Idaho's newborn screening, no matter how long it takes. She says she will push for other forms of leukodystrophy to be added too. She is now working with the Leukodystrophy Newborn Screening Action Network to help her achieve her goals.
"There are a lot of kids here in the Treasure Valley with leukodystrophy," Piper said. "It's worth getting it on the screening, it's worth fighting for."
If families with babies on the way are interested in screening for Krabbe disease, you can order a kit from Hunter's Hope. It's a nonprofit founded by football player and Buffalo Bills quarterback Jim Kelly. He had a son with Krabbe Leukodystrophy who passed away, and he founded Hunter's Hope in his honor. You can bring the kit to the hospital to have your newborn tested by your provider. For more information, check out Hunter's Hope.
Getting genetic testing as a couple before you have children, will also reveal what life threatening or life limiting genetic conditions you are carrying, and the risks of passing those conditions on to your children. You can talk to your doctor about that option as well.
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