Sandy Zuilkoski Mendenhall is organizing this fundraiser.
As many of you know Tommy recently had laser ablation surgery on his brain. Tommy has a rare medical condition known as Hypothalamic Hamartoma (HH). HH is a benign tumor connected to the hypothalamus. This caused Tommy to have many seizures daily (3-4). He had gelastic (laughing) seizures and absent (staring) seizures predominantly. He also has had over 30 grand mal seizures in this past year. Tommy had his first surgery on August 11th. The neurosurgeon was able to successfully do the ablation to the right "connection" which was the larger of the 2 connections.The dr had hoped that removing Ithe right connection would eliminate if not drastically decrease the amount of seizures Tommy was having. Unfortunately this has not been the case. Tommy continues to have seizures daily (up to 6 per day). We saw the neurologist today, Thursday August 28th) and he confirmed what the neurosurgeon had said. A second surgery will be required for Tommy. There are a few options as far as surgery goes and the neurosurgeon will ultimately be the one which procedure is the best for Tommy and for the outcome after surgery. Because of the location of the second (left side) connection, laser ablation may not be the best option this time. They could either do a procedure endoscopicly or an open procedure (meaning cutting the skull to get to the hamartoma). I have been asked by a few people if we are willing to take the risk of Tommy possibly having memory loss, vision impairments or possible brain damage instead of having him have seizures. Here is my (our) answer. As of today, Tommy cannot be left alone at all. Someone has to be with him at all times, when he bathes, when he sleeps, when he plays, when he wants to swim or be a "normal" active 8 year old boy and many other times throughout the day. Without this surgery, Tommy will continue to need this for the rest of his life and there is a very good chance the seizures will continue to become more frequent and longer in duration as time goes on. I (we) will do whatever it takes to provide Tommy the best chances possible at having a seizure free independent life. Larry, my husband, Tommy's Dad, has taken on a second job to help pay what little we can on the overwhelming medical expenses that pile up daily with new tests being ordered again today and change in medication. I am still unable to work as I am Tommy's constant caretaker. I wouldn't have it any other way. We have been and will continue to do carwashes, garage sales, Lily's Looms O'Love, and any other fundraiser that anyone can think of. However, even with these fundraisers we still need alot of help!! We still owe quite a bit ($18K) from Tommy's first procedure and that amount will easily triple with the next surgery coming. We do not have a date yet for the surgery. They will wait at least 3 months after this surgery to allow all swelling and healing to be complete. It is probably the hardest thing I (we) have to do asking for help, but sometimes you have to suck up your pride and realize that there are so many people out there who are willing to help out wherever and however they can. So, I am asking for your help! If you can donate to Tommy's fund we would really appreciate it. If you cannot donate but have fundraising ideas, even if you're across the country, let me know. And I most importantly, please keep my wonderful Tommy, who brings a smile to everyone's face and has so much love to give, in your prayers every night. Ask God to please watch over him and protect him from harm.
Thank you all so much for taking time out of your busy and chaotic lives to share Tommy's story. If you can share this with your friends on FB I would be so grateful! As for today and every day, Tommy is going to keep on keeping on!!
Love and thanks to you all!!
Sandy Mendenhall (Tommy's Mom)
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