Texas Family is Racing to Raise $100k to Benefit Their Son Who Suffers From Hereditary Spastic Parapalegia

Originally reported by KVUE ABC, the race is on for the Rosenberg family to raise the funds that will benefit their 3-year-old child suffering from a rare brain disease known as hereditary spastic parapalegia, or SPG47. Raising the funds could be the deciding factor if Ethan will be able to keep his leg or not.

SPG47 is an extremely rare brain disease that is aggressively damaging. Patients with this disease are known to experience a slow rate of mental development, as well as physical and often lead to low-muscular growth. Microcephaly and seizures are also common. It can take way more time for a child to learn to walk, and can regress those who already have. All the Rosenbergs’ want is for Ethan is to retain all the progress he’s made and continue to improve. Like any parent would want, they so badly want to see him run one day.

It’s been a tough journey for this family, but now a ray of hope has presented itself. An anonymous donor agreed to match $100,000 if they can garner the funds through donations. All the money would go directly to SPG47 research that would instantly benefit Ethan. While this is an incredible opportunity there is indeed a catch. The donor gave them a goal completion date of January 31st, 2018. That’s not far away.

If researchers are granted these funds, they are confident that they could a cure that would allow Ethan to continue his physical growth and eventually run like every other kid. The SPG47 organization has an even grander goal of $4 million. Dr. Darius Ebranhimi-Fakhari at the Boston Children’s Hospital is hoping to continue experiment on fibroblasts derived from individuals with SPG47. His project could benefit tons affected by the disease and they are hoping to make huge efforts going into the New Year.

Ethan is now 3-years-old, and the next years of his development are crucial. Success with the fundraising and success with the experiments would change the life of Ethan, and change the life of many others who are experiencing the aggressive disease.

If you would like to donate to this project, click here.

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