DETROIT LAKES — The Detroit Lakes community gave Rochelle Christianson a reason to be thankful, and her son countless smiles.
In September, friends hosted a fundraiser on her behalf. The goal was to provide financial assistance for Christianson to travel to Florida for a conference on FOXG1 syndrome. The generosity of the community achieved the goal.
“I want to say, ‘Thank you so much, I really appreciate the help and support,’” Christianson said. “We live in such a great community and so many helped my family tremendously.”
Christianson emphasized that the FOXG1 syndrome conference was an opportunity of a lifetime. Had she not been able to go, the life of her baby boy may be on a different trajectory.
Last June, Christianson adopted Prince. Shortly thereafter, he was diagnosed with FOXG1 syndrome, which impairs development, causes structural brain abnormalities and is so rare that it affects less than 1,000 people worldwide.
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Wanting to keep the smile on her Prince’s face and understand what can be done to provide him with his best life, she looked for answers online. She wanted to learn more about the seizures he may soon develop. She needed to understand the impacts of surgery should a feeding tube need to be inserted, as those with FOXG1 syndrome have issues swallowing. She needed answers, but locally, there were no specialists.
When Christianson learned about the conference a world of generosity opened up, from those who hosted a fundraiser to those who donated. She was able to sign up for the conference, rent a van and head south. She brought family to help care for Prince and share driving duties on the almost 2,000-mile road trip.
Christianson said they took about 2 ½ days to reach their destination. As the terrain changed and the countryside turned into bustling cities, Prince’s eyes were as wide as his smile — taking in the view.
“It was a nice experience and Prince does great riding in the car,” she said. “He enjoys seeing things, and we have a seat that swivels, so he was able to enjoy the company of his family, too. Flying in a plane would just be too difficult (due to his needs).”
Upon arriving in Florida, Prince experienced a heated pool and saw the ocean.
“And of course, tasted sand,” Christianson said with an eye roll all moms seem to have when their baby makes a foolish, yet common choice.
As Prince was on a vacation of a lifetime, Christianson was able to listen, learn and ask questions about FOXG1 syndrome from medical experts.
“I learned so much,” she said.
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For example, she said Prince developed an adverse reaction to wind. Initially, she thought there may be a concern with the brain.
“I spoke to a neurologist,” she said, noting the neurologist said it is likely that Prince is developing asthma, which is common due to the lack of muscle those with FOXG1 syndrome have to cough.
Christianson was also able to speak with other families of children with FOXG1 syndrome. She said Prince was the youngest child there, and she felt she took home the most advice from those who had “been there.” One big concern she opened up about was surgery to insert a feeding tube. She explained Prince has reflux and it has gotten so bad that he needs to sleep sitting up.
“It was a relief talking to them,” she said. “It helped me move forward with (scheduling) the surgery. I’ve been scared to death of it, but they told me good things. And, their kids looked more healthy and were able to gain weight.”
She hopes when the feeding tube is inserted before the end of the month that Prince, too, will gain weight and with it, more muscle mass.
“I was able to exchange numbers with families (who have a child with FOXG1 syndrome), so we can continue to support each other,” she said. “The doctors also gave us their personal emails and encouraged us to contact them with questions.”
Having the additional contacts when questions arise has given Christianson peace of mind she has not known for some time.
The Trust Project
