Pull a van for Holly

Holly is a beautiful and loveable 7 year old little girl. As a newborn Holly presented perfectly until she was 7 weeks old, when she had her first seizure, investigations in temple Street children's hospital lead to her diagnosis of a brain malformation called pollymicrogirea (PMG) which is quite rare. Pollymicrogirea can affect people in different ways from mildly to profoundly. Holly's tests showed such severe seizure activity her parents were told to bring her home and enjoy her. But Holly is still here fighting an unbelievable fight every single day. Her refactory epilepsy leaves her with daily seizures, happening anytime day or night. Her epilepsy has also further damaged her brain making her loose skills that she has not easily learned. Constant anti epileptic medicine changes and cocktails have also had huge side affects from drowsiness to critical forms of aspiration pneumonia and acute liver disease. She goes through all this while not being able to communicate her wants or needs as the brain to muscle is severely affected. Holly is 100% nonverbal, non-mobile and tube fed and needs round the clock care. Holly is an unbelievably resilient, strong girl who fights this fight with a smile on her face and never gives up, a true princess warrior. Holly's family try to keep home life as normal as possible, going on days out and to her brothers football matches, but lifting her in and out of the car is getting harder and harder the bigger she gets. Holly is tall and we can just about manage at the moment. Her wheelchair is just as heavy, if not heavier to be lifting in and out of the boot and she is soon due a bigger heavier wheelchair. As she gets bigger they are also restricted to the places they can go as its harder to find suitable places to change her, being able to change her in the back of a van would make life so much easier and accessible. A wheelchair accessible van would have a massive positive impact on the whole family.

Our names are Damien and Trisha Cullen.  We live in Newbridge Co. Kildare. Holly is our niece and also Trishas goddaughter. On the 13th of August we are holding a charity event to help raise funds towards a van for Holly. We will be pulling the exact van Holly needs which is a ford custom van. We are pulling the van from Newbridge Co. Kildare to Edenderry Co. Offaly which is approximately 40 kilometres. It is been pulled by family and friends. The cost of the van is €50.000. All donations would be greatly appreciated. All donations will be going towards a van for Holly. 

 

Thank you

Damien and Trish Cullen