Eleanor "Leni" Kaplan was born a perfect baby in June of 2018. On her fifth day of her life, she had to be rushed back to the hospital and admitted to the NICU, thus beginning our quest for answers. Three years ago, she was diagnosed with the the rarest and most severe genetic diseases, TECPR2 or Spastic Paraplegia 49, an extremely progressive neurodegenerative disease that is ultimately fatal to children. It is pediatric ALS. Our hearts stopped, we were told there was no treatment, no hope and most importantly no cure. So we are creating one, and in the process, revolutionizing the current broken model.
There are currently over 12,000 Rare Diseases. Most of these affect young children who will never see the age of 5. After realizing that 95% of these have no cure, let alone any form of a treatment, we realized just how big this problem was, and much bigger than just our Leni. We knew had to help the countless others with similar diseases and no options or hope.
We have assembled the best team in the world and have done the impossible, creating a successful Gene Therapy CURE that is currently in development. We have been able to accomplish this by establishing unprecedented partnerships with Dr Steven Gray at UTSW, Harvard Medical School, Boston Children's Hospital and Weizmann Institute of Science in Israel.
We need your help to bring this CURE and many others in our pipeline to completion. Through curing TECPR2, we have identified the key pathology of Lysosomal Storage Disorders and Neurodegenerative Diseases, making revolutionary discoveries for cures of many major diseases that affect millions, including Alzheimers and ALS. It has been a very humbling, yet amazing journey of not accepting no for an answer and actually doing what no one thought could be done. With this tremendous progress, we have created the network and blueprint for all other rare diseases. We are paving the way for the over 11,000 Rare Diseases. We were given a true gift through a devastating diagnosis, and cant wait to help and share it with the world.
Leni was born in Boston Massachusetts, on June 27th, 2018. She was a perfect baby girl, even receiving a rare 10 on her APGAR. It wasn't until a few days later at home, that we realized something was wrong. She started to deteriorate rapidly, developing severe hypothermia, struggling to breathe and having to be admitted to the NICU. Little did we know just how much our lives were about to change. It took a year and a half of traumatic NICU and PICU stays, missed developmental milestones, recurrent pneumonias, multiple surgeries to address breathing and swallowing difficulties, a ventilator, a permanent feeding tube and a few close calls until we received the diagnosis of TECPR2. It's a terrible disease, eerily similar to ALS in adults, that affects every aspect of her body, worsening every day, leaving us fighting the clock.
Even with the odds against her and in face of adversity that few rarely see, Leni is a fighter, who continues to prove everyone, including modern medicine wrong. Doing the impossible everyday. Not just walking, but dancing. Not just talking, but singing. Her love for life and all it entails knows no bounds. She never fails to smile, or to give an encouraging hug. She truly is the captain of, Team Leni!
The Eleanor Kaplan Foundation is a registered 501(c)3 non-profit (Tax ID 86-1876534)
All Donations are 100% tax deductible.
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