My name is Gina Pens. Trying to get my families/siblings stories out there and also WE ARE IN NEED OF A WHEELCHAIR ACCESSIBLE VAN. I will try to make this a long story short as it is so much easier to explain in person. I have 2 siblings with special needs as well as a very rare disease. Rare as in only 50 in the WORLD and only 2 in the United States which happens to be my brother and sister and as of January 2024 when my sister was in the hospital in the PICU, we then found out she is the ONLY known female Anthony who is 27 and Alyssa who is 15. At the beginning of their lives, they were both able to walk and talk and completely normal as children because of their disease they just progressively lose everything. Yet, they did not get a diagnosis till 2018 which then me and my family had to go to Nashville Tennessee to UNDIAGNOSED DISEASE NETWORK at Vanderbilt Hospital. Anthony is currently home in a hospital bed hooked to medical equipment. Alyssa goes to school but is completely wheelchair bound. Both have feeding tubes. Both are quite medically fragile. Both non verbal. Again, there is a lot more to their story, just so much to explain. We have a donation account with Old National Bank also can make donations to the account named, “For the benefit of Anthony and Alyssa Pens” is what it is under.

Thank you! Feel free to contact me at [adresse courriel retirée]. There condition is called Hereditary Spastic Paraplegia Type 35 (https://undiagnosed.hms.harvard.edu/participants/participant-071/. ) The disease has caused them to lose their ability to walk and talk which they once could among many other things.

There is no cure for the disease and it is progressive. This van is crucial for their mobility to get to and from many therapy and doctor appointments. Anthony and Alyssa both attended Coal City Schools. Alyssa still attends. An accessible van would be life changing.

https://www.shawlocal.com/the-herald-news/2024/03/15/coal-city-siblings-battling-extremely-rare-disorder-special-van-needed/