Prince's family in Detroit Lakes asks for help
Detroit Lakes boy diagnosed with disorder that affects less than 1,000 worldwide
DETROIT LAKES - When Rochelle Christianson adopted Prince, 2½, last June, she knew he had mental and physical disabilities. She just didn’t know how rare they were.
Through genetic testing, Prince was diagnosed with FOXG1 syndrome. There are less than 1,000 people worldwide with FOXG1, according to an article in the University of Buffalo Department of Biological Sciences. The National Library of Medicine explains FOXG1 causes impaired development and structural brain abnormalities, including an “underdeveloped connection between the right and left halves of the brain.”
As time marches forward, Rochelle said the prognosis for Prince includes seizures, jerking movements and feeding problems, in addition to limited communication and social interaction. Rochelle loves her toddler and takes on the additional responsibilities of having a special needs child with a smile. But she needs help getting to Florida.
“I want to drive there with my family and Prince’s PCA (personal care attendant) because there is a symposium and conference being held on FOXG1 Syndrome,” she said.
Several specialists from around the world are scheduled to speak about FOXG1, clinical trials being done and other advancements being made at the symposium Nov. 4-6.
“I want to learn more about the seizures and clinical trials,” she said.
Connecting with other families going through the same challenges may also give Rochelle insight into what she can do to help Prince get adequate nutrition. She explained those with FOXG1 have issues swallowing. While she has found some baby foods that work, he is still on a PediaSure diet to get his nutrition.
“He doesn’t need a feeding tube yet, so that is good,” she said, noting he also has Hypotonia, or a lack of muscle tone that creates problems with grasping things for more than a few seconds.
Because the syndrome is rare, local doctors and therapists can only offer information and direction to the best of their knowledge. She noted they provided occupational therapists and speech therapists. The school has also provided assistance. Rochelle is grateful for all they have done, and continue to do, to help with their limited understanding of such a rare disorder.
“I don’t get a whole lot of answers at times, and that is hard,” she said. “They have specialized doctors that will be there (at the symposium). I feel I need to be there, too.”
While Prince struggles with many things, smiling is not one of them. As his mom emphasized her hope that an upcoming fundraiser will help cover the costs of the road trip, his cheeks kept lifting, as if he understood those that love him are fighting to help him live his best life.
The fundraiser for Prince is set for Saturday, Sept. 10, from 12-5 p.m. at the Detroit Lakes VFW. Sloppy Joes will be served, a silent auction will be held and bingo will be played.