Family is Racing Against the Clock to Raise $4 million for Their Baby Boy With Rare Genetic Disease

 

When Amber Freed and her husband Mark resorted to an in-vitro fertilization (IVF) baby they were overjoyed when they found out they were pregnant and were welcoming two new babies Maxwell and Riley in the spring of 2017.

The new proud parents were delighted to watch the process of their children getting bigger and growing every day, but they soon noticed some developmental differences in the two sweet children.

Riley was growing normally while Maxwell was struggling to move or talk. The new parents started realizing that Maxwell was missing all of his developmental hallmarks. Maxwell did not roll, crawl, or even babble.

His parents spent time going to different doctors until they finally found a specialist who could provide an answer for why their son was not developing, although it was not a very promising revelation.

Maxwell was diagnosed with a disease so uncommon it is unnamed. It is named after the gene it affects: SLC6A1.

This ultra-rare disease makes it a challenge or near impossible for Maxwell to communicate or move. There is also a high probability that it may cause Maxwell to have seizures when he turns three. Unfortunately, as with many rare diseases, there is no treatment.

Maxwell’s mother Amber comments that often times for babies with rare diseases their diseases are considered “too rare to care.” But Maxwell’s parents DO care.

In fact, they have called scientists from around the globe to find a cure. Amber actually quit her job to dedicate her time to finding a potential treatment or cure for her son. She has finally found a small group of scientists who are willing to try and create a therapy to treat Maxwell and those who have his same disease.

The problem is that the therapy is brand new and has never been tested. It will also cost 4 million dollars for Maxwell to participate in the study.

Maxwell’s family is moving ahead “full steam” with their goals and have already raised almost 1 million dollars.

Maxwell’s parents are determined that their son’s existence has a purpose and he will have a larger impact than anyone could ever imagine.

“I am just so blessed and honored to be his mother,” says Maxwell’s mother.

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