Medical Transportation Needs for a Family

I am fundraising for a truly exceptional family with an exceptional need. I have mentored Freddy, Solange and their 3-year-old son Dylan for the past 1.5 years through Welcoming the Stranger, a group that is now part of MANA; https://mana-maine.org. Throughout that time, I have witnessed incredible growth and perseverance by all three in terms of adjusting to life in America, navigating the legal immigration system, and becoming independent and contributing members of society.

Despite their progress, the family has been fighting an uphill battle against a formidable foe for the last three years. That struggle is named Chronic Granulomatous Disease, or CDG. It is an incredibly rare disease that leaves their son without the proper enzymes to fight off fungal and bacterial infections. While treatment for CDG has come a long way in the last 20 years – it is considered a life-limiting disease. The only complete cure is a stem cell transplant.

Dylan is, by all accounts, a tour de force. When he is healthy, he’s incredibly independent, full of life, with non-stop energy. When he is sick, that all goes away. CDG and the medication cause many secondary health complications; gastrointestinal, lung and liver issues are common. During his first 12 months in Maine, Dylan stayed at the Barbara Bush Children’s Hospital three times. Fortunately, Dylan was able to get into Boston Children’s Hospital, and his care has been nothing short of miraculous. The team of doctors has helped navigate the family through all the complications caused by CDG and the medication. Amazingly, a 90% bone marrow match was identified, and Dylan is scheduled to undergo a stem cell transplant in October.

We are fundraising for the following need: funds to help purchase a used car and other transportation expenses associated with the travel to and from Boston during Dylan’s transplant process. While the family has used the limited social resources and their own resources to get to Boston from Maine almost weekly for appointments, that support will not be there for the upcoming transplant. Because the match is not 100%, the risk that Dylan will need to stay in Boston for an extended period is greater. Without reliable transportation, the obstacle is too great for the family to face alone.

Any funds left over will be used to help with legal fees for their asylum case, estimated to be around $8,000. Freddy and Solange have successfully applied for asylum. Their first court appearance is scheduled for 2023. They are now considered legally present in the U.S., and both are working and contributing to the Maine economy. Freddy is working in the senior living industry, and Solange is starting to work while also taking care of their son, her number one priority. They love the greater Portland area and are avid contributors to their church and the local community. They hope that their son can live a normal and healthy life.