I’m hoping that you will take a moment and read Karen’s story below and get to know her incredible family. And if you are able to go further and make a donation and/or share this story, I say “thank you”. I know when you read Karen’s story, you will think, “this can’t be true; how can someone bear all these burdens”. But, my friends, it is true. If ever there was a need in your heart to perform an act of kindness, please let this be it.
Hi, my name is Karen and I have been truly blessed with 4 children and now several grandchildren. One of my granddaughters, Mia, is ten years old and has the pluckiness you can only find in a child. Like many children her age, Mia loves Anna from Frozen and could listen to the soundtrack day and night. Mia likes playing with her sister and loves to meet new people! What makes this so incredible is that Mia also lives from Spastic Quadriplegia Cerebral Palsy, Cortical Vision Impairment and Microephaly. Spastic Quadriplegia CP is a devastating condition that affects all four limbs and makes it impossible for Mia to walk or otherwise take care of herself. Mia has had two helpful surgeries on her hip, and we are hoping that the next hip surgery will relieve her of some pain that she currently experiences. Mia’s Cortical Vision Impairment has left her nearly blind (she can only see for about ten feet) and her Microephaly has resulted in Mia having a smaller than normal head, intellectual disabilities and seizures. While this is a lot for a ten-year-old, Mia refuses to be held down; Mia army crawls to get around the house, reach her toys and play with her sister. We remain hopeful that one day, with the help of physical therapy, that she could walk with assistance.
My son, Steve, Mia’s father, loves Mia with an intensity reserved only for parents. Steve, however, is also being tested in many ways. At age 11, he was diagnosed with a germinoma brain tumor. Germinomas are very rare. Steve was the first child to survive this type of cancer at the University of Maryland and only the second to have been diagnosed with it. Steve fought so hard and beat it! We were elated! Unfortunately, after nearly seventeen years of being in remission, the cancer came back very aggressively. Steve had tumors all over his brain. He was again treated at the University of Maryland where all but one “persistent abnormality” continues to haunt us. While Steve’s doctors continue to be surprised and awed by Steve, they are unable to provide much in terms of a prognosis or expectation for his future. We remain hopeful for Steve and hope that his cancer, which has been “stable” since 2015, remains at bay.
Steve’s body has been devastated by his cancer. He has seizures, brain damage, poor short-term memory and is legally blind due to glaucoma. Although medications have helped with Steve’s seizures, Steve and Mia rely on myself and the kindness of others for care and cannot be left home alone. Even a short visit to a friend’s house (just four doors away) required emergency assistance to help Steve get back home (he had gotten lost). Like Mia, Steve will not be held down. Steve does all he can to care for Mia and nine-year-old Kyra, who thankfully does not have any severe medical conditions, but often relies on me for transportation, shopping and other basic needs.
Mia and Steve’s reliance on me, unfortunately, is no longer viable. I was recently diagnosed with Multiple Myeloma. Multiple Myeloma is a rare blood cancer that has caused bone lesions in my ribs, hips and spine. This results in weakness, pain and the embrittlement of my bones. Where I was once able to help my son and granddaughter by lifting Mia and her chair into my car, I can no longer do so without endangering Mia and potentially hurting myself. While my doctors are hopeful that I will be in remission within a few months, I am in significant pain each day. Even in remission, I will require a lifetime treatment of mild chemotherapy.
With your kindness and generosity, we hope to purchase a wheelchair accessible van with a chair lift so that I may help Mia and Steve get to both their medical appointments as well as school, birthday parties, parks and all the other events that make childhood, well, a childhood. We have researched wheelchair accessible vans and found they range in cost from $40-$100K (https://www.consumeraffairs.com/automotive/wheelchair-vans/#). Therefore, we are setting our goal for this fundraiser at $25K.
We would also like to purchase a Rifton bike for Mia. Rifton bikes are tricycles that allow children like Mia to develop leg strength, balance and coordination. We are also hopeful that the bike will allow Mia to engage other children on a more social level. These bikes start at $1,000 but require an additional nearly $1,000 of extra items and modifications to make them viable for Mia.
I hoped to close this fundraiser request with an inspiring quote about perseverance. The truth, however, is that life has been incredibly difficult for us. I am often very afraid. I am afraid for Mia. I am afraid for Steve. I am afraid for my family. And if you’ve made it this far into our story, I will not lie to you: I am also afraid for myself. This experience has taught me why some people refuse treatment for their diseases. That being said, my faith is resolute! My theme, if you will, of late has been Joshua 1:9 – “be strong and courageous, do not be afraid; do not be discouraged; for the Lord your God will be with you wherever you go”. This experience has shown me the general goodness of people. People I’ve known and people I’ve never met. When our day comes, we will leave this earth in the same way we came in: with absolutely nothing but the love you, our families and God have given us. Until that day, I hope that you can help us.
- William Reehil
- Roxanne Fitzgerald
- Bryan Castagnetti
- Elaine Moore
- Kira Rogers
Organizer and beneficiary
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