A BIT ABOUT US
Most people are blessed a lifetime with their children. Not Colby and Lexi. A realization we are all still struggling to understand as a family.
Axel A. Riordan is a loving addition that was born October 15 2017, completing their home as a family of 4. He was a happy healthy growing boy, completing all milestones the first year of life. However after his 2nd birthday, Axel still struggled with walking. After multiple doctor appointments and various delayed testing with no answers. No direction. No sense of urgency. Lexi presented Axel to the children’s ER with concern, in an attempt to get a fresh set of eyes on her son. It was during that admission Colby and Lexi were told the news that every parent fears. Extensive testing revealed that Axel suffered from a severe, degenerative, fatal condition with a life expectancy of 5-10yrs. Early Infantile Metachromatic Leukodystrophy (MLD)
To say Colby and Lexi are devastated is an understatement. This disease is progressive! Within a year, they have already witnessed Axel losing simple abilities such as sitting up, swallowing, walking, talking and crawling. Eventually this will spread, affecting his vision, hearing, and breathing. He will struggle with a constant state of pain due to the nerve damage. There is no cure.
Axel did not qualify for any of the clinical trials available for MLD since he was already too far progressed, which crushed the entire family's hopes of slowing the disease. The only thing we can do for him now is make sure he has the best quality of life to make him the most comfortable and the most happy. We found the best care team with Dr. Maria Escolar in Pittsburgh, PA which the family travels to at least a minimum of twice a year and lots of telemedicine visits.
I am asking all friends and family to support and lift my sister Lexi and her sweet family in prayer. For those that know the Riordan family, you know how blessed these little boys are to be loved with the kindness and patience these parents cover them with on a daily basis. Their lives are forever changed.
The medical expenses at this time are unfathomable- medical care and travel, equipment not covered with insurance, handicapped accessible additions to the home, transportation that supports wheelchair and equipment. The list goes on!!! Colby and Lexi have so much on their plate right now- emotionally and physically. So the family and close friends are coming together to help tackle some of the burden.
ANY contribution to help relieve the pressure and allow them to focus on Axel’s care would help.
THANK YOU FROM THE BOTTOM OF OUR HEARTS FOR YOUR LOVE, SUPPORT, & PRAYER We will continue to keep you updated on our MLD journey.