Help Kai Get To The Pitt Hopkins Clinic

My son, Malikai Friesen, was diagnosed with Pitt Hopkins Syndrome - one specific gene deleted that changed his life forever and has sent us so many unanswered questions, and given him poor life quality with many more challenges still to face.

Within the last six months, Kai has been hospitalized 3 different times, a week each time due to severe constipation, as well as constant sleeping and crying. When Malikai is in the worst of his symptoms, his quality of life is very low. He sleeps 20-22 hours a day, waking briefly (screaming and/or crying) for G-Tube feedings through his stomach and then goes right back to bed. His team is doing the best they can to figure out what is causing these frequent episodes. The best guess is neurological irritability.

Malikai’s quality of life is suffering, and I’m always nervous for the next episode to come. It’s emotionally draining for me as a mom almost daily.

Malikai is in desperate need of better help medically. In my opinion, the staff at the Stollery has reached its capacity to help him. At this point because his Syndrome is so rare, all his doctors don’t even know this Syndrome exists and therefore aren’t educated on how to best treat him.

There are only 1,000 people total worldwide with Pitt Hopkins Syndrome. Two clinics specialize in Pitt Hopkins - both in North America: Colorado and Boston.

We need $6,000 to cover the full day of specialists, flights, accommodations, and meals.

After this, the team in the States will be able to keep in contact with his team back at the Stollery which is also a crucial step to giving him the greatest chance to reach his full potential for the best quality of life we can give him.

To learn more about Pitt Hopkins Syndrome you can visit; https://pitthopkins.org/about-pitt-hopkins/