Mia Mulcahy

In May 2023, at the age of 2, Mia Mulcahy started showing lack of development in her legs; she was unsteady and not progressing with running and walking as she should. Chris and Aleah advocated with the pediatrician, knowing all children develop differently, but concerned that it could possibly be more. They received an appointment with Boston Children’s Hospital and Mia had an MRI which revealed she was born with a genetic disorder called Leukodystrophy. Leukodystrophy is a rare genetic disorder that affects the central nervous system. The central nervous system is made up of your brain and spinal cord. The terrible disease damages the white matter of your central nervous system, which includes your nerve fibers and nerve cells.

The disease causes gradual loss of physical and neurological functions in children. The brain and body cannot receive signals from each other. There is no cure for Leukodystrophy and it is a fatal disease.

In the past 7 months, Mia has undergone many tests and due to the type of strand she has Metachromatic, (there are over 50 strands) she does not qualify for experimental treatment at this time.

Mia has lost her ability to stand, walk, and talk. She is slowly losing her ability to eat and has a hard time to communicating her needs and wants. She has the most incredible and infectious smile and it is always bright when she is watching princesses, reading books with her mom and dad or snuggling with her dog, Leo.

The road has been long and unimaginable for Chris and Aleah. They are trying to stay positive and are the most loving parents. The time has come that Aleah cannot work full-time and the trips to Boston Children’s have become more frequent. There is nothing they can do to proactively care for Mia; they must react to her symptoms as the disorder worsens.

We are humbly asking for your help in supporting Chris and Aleah with their care for Mia. They are two of the most fantastic people we know, they would do anything for anyone. We think we can all agree that this is a parents’ worst nightmare and although they do not want to ask for help, they know that they need it.

We are hopeful that with the support of others, they can continue to make Mia the top priority and not have to worry about the financial consequences of making that happen. The bills are growing with each doctor visit and Mia will need equipment at home as she gets bigger and the stages of the disorder progress.

We appreciate you taking the time to read Mia’s story and are forever grateful for any assistance you may be able to provide. Please keep them in your thoughts and manifest all the strength to Mia and her parents as they navigate this aggressive and unforgiving disease.