Noemi is six years old and a fun-loving little girl. She enjoys running around in the daycare center and delighting parents and friends with her hearty laugh. But if you spend a little more time with Noemi, you will notice that she is having difficulties.
The little one keeps falling while playing and injuring herself. And her language is more like that of a 3-year-old. The worst: Noemi’s health will get significantly worse in the coming years.
But there is hope for the brave Berliner. Thanks to a new miracle drug that has already helped little Michael (6) from Canada.
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Like Michael, Noemi also has Spastic Paraplegia 50 (SPG50) – a neurological disease that affects just under 100 people worldwide. By the age of 10, most patients can no longer move their legs, are paralyzed by the age of 20 and, according to doctors, do not live past 30!
First symptoms at eight months
“When Noemi was eight months old, we noticed for the first time that her physical development was delayed,” says her mother Maxi (38) to BILD. “At some point we also noticed that she had problems with gross motor skills, fine motor skills and language development. After many different examinations, the diagnosis came completely unexpectedly at the beginning of December 2022: SPG50.”
Little Noemi (6) from Berlin has spastic paraplegia 50 (SPG50 for short) – a fatal nerve disease that only affects 100 people worldwide
And the 38-year-old emphasizes: “You would actually expect that with such a diagnosis you would fall into a deep hole. We have Terry Pirovolakis to thank in large part for the fact that this didn’t happen.”
The father, whose son Michael also suffers from SPG50, traded in his house and liquidated all his savings. The family used the money to finance a team of scientists at the Southwestern Medical Center in Texas (USA). They researched mice and human cells and were finally able to develop a drug and test it on little Michael. The gene therapy worked and the boy has been doing much better since then.
Michael’s case gives the Berlin family hope
“We hope that our Noemi can also receive this promising treatment and that her condition will stabilize,” says mother Maxi. “We have already spoken to Michael’s friendly family on the phone several times, which gives us a lot of encouragement.”
Noemi is a happy and bright child, but her development is impaired
However, funding for larger studies is currently not secured. “No investor is going to give you money to treat a disease that doesn’t make a profit,” says Terry Pirovolakis, who advises many affected families around the world. “That’s the dilemma we’re in.”
That’s why Noemi’s parents are now collecting “Gofundme“Donations for the further development of the miracle drug, which will hopefully soon be able to treat the little Berliner and many other patients.
