Reid Needs You
Reid was born healthy on May 2, 2009. For the first 18 months of his life, he progressed and grew normally. The only thing we noticed about him that we couldn't explain were some small white patches of skin in various places on his body. But as you can see, he is very fair, so they didn't seem to be a problem. What we didn't know is that those patches are diagnostic of a genetic condition Reid has that had not been diagnosed yet.
At around 18 months, we noticed some behavior we hadn't seen before. He would smack his lips and make a face almost like he was tasting something bad. His doctor thought he might have gastric reflux. But the episodes became more noticeable and he would sometimes stagger a bit or stare off into space for a few seconds. It became apparent eventually that he was having seizures. We thought it might be just Absence Syndrome--minor seizures with no known cause which children tend to outgrow by puberty. However, as they increased in length, the doctor ordered an MRI.
That was last November. The radiologist called Reid's pediatrician and by the time we were in the car, she had called my daughter. He has Tuberous Sclerosis, she said. I'm an RN but I had no recollection of ever hearing of this condition. Essentially, there are non-malignant growths called tubers which can occur in the brain, heart, kidney, bladder and eyes. In Reid's case, he has diffuse tubers in various parts of his brain. His eyes are fine, as are his kidneys, but he does have two small ones in his heart, which are benign and will cause him no trouble. The ones in his brain, though, are causing a lot. He continues to have seizures in spite of being on three different medications. His neurologist hopes to be able to stop the seizures altogether, but it is difficult with this condition. We pray that she can find a way, for he has stopped progressing as far as speech is concerned. He is smart, and understands everything, but his inability to communicate frustrates and irritates him, as do the seizures themselves. This is an incurable disease. If we can stop the seizures, he can catch up, but right now his brain is so busy with the seizure activity he has no time to learn. For each one we see, his neurologist tells us, he has hundreds of micro-second long ones.
Since his diagnosis, the medical bills have totalled over $10,000. Insurance pays almost nothing. Reid's dad works in his father's business and the family's income will not begin to cover the ongoing expenses Reid will always have. That is the reason for my starting this page. I know how generous people are when they see a need, and I hope that generosity will help relieve some of the financial burdens of Reid's illness. Mind you, the ONLY burden is financial; we feel blessed to have this sweet boy in our lives. He is such a bright little guy, sunny and happy and trying so hard to talk and learn. Thank you to everyone who might be kind enough to help. We will be eternally grateful for any donations we receive.
Reid will go to special needs first grade this fall and he has had a great year in SPICE kindergarten with some very dedicated teachers and aides. He still has his amazing therapists and will soon have more services, as he is now diagnosed with severe autism. His seizures are under control, which is very good, and his TSC is stable. He is a whiz with his iPad and has branched out into eating more than two foods!
He continues to try hard and learn at his pace and he continues to make us laugh and also make us wonder--often--just what is going through his head. He's one of a kind, no doubt about that.
I am leaving our page open for now, just so I can post the occasional update, but as I mentioned we do not need donations of money anymore. Prayers and thoughts--that's another story. We'll take those forever.
Thanks again everybody, love to all from all of us.
My purpose for updating then is simply to do that--update. Many people follow Reid's situation on this page and I want to let them know what is going on with him.
Reid is 4 years and 9 months old now, growing fast and so cute. He still struggles with speech delays, by far the most daunting challenge he faces. His speech therapist, Brenda, works with him twice each week and he does try so hard to do what she asks of him. But it is an uphill battle, and I am certain his frustration level is beyond imagination. Still, he laughs and teases and acts silly when he can, and he now has an iPad with various programs which provide him with the ability to ask for things, tell us things, show us what he is asking for, etc. It is pretty amazing to watch him scroll and tap and find what he's looking for in record time.
Tragically, Reid's beloved neurologist, Laura Sweetman, passed away suddenly in December of 2013. It has been devastating for her family, friends, patients and their families--and the world has lost a wonderful soul. We are looking forward to Reid's appointment with Dr. Lewis at PCH, who is highly recommended and who we hope will help Reid with his frequent headaches and other issues that come up. Meanwhile he is chugging along, still hates his medicine with a mighty passion, but few seizures occurring that we can see. I am still waiting for some genius in the pharmaceutical world to come up with patches for these meds. They are awful, and he has to take SO much twice a day. Don't know how Christa does it. SERIOUSLY, I don't know. How. She. Does. It!
Aiden continues to be the big brother Reid needs and loves, and Reid will often ask for him if things aren't going his way. It is tough for Aiden to watch Reid struggle with so many difficulties, but he's (Aiden) just a born optimist, so he chugs along too.
We always appreciate prayers for Reid and his family, and knowing how many people are interested in him is a blessing. He is an amazing boy in so many ways. Wish I could wave a magic wand and cure him, because he deserves no less! But I can't, so I just (we all just) love him and do whatever we can to remove as many boulders from his path as possible. A belated happy 2014 to all of you from all of us, wishing you many blessings in the New Year. Love, Jan
Thank you for you interest in our little guy on behalf of your mother-in-law. Please let me know who you are and if you feel you want to re-post our link we would be very grateful.
My Mother-in-law Mary Ann Ehlert would have been very interested in helping this child. I hope our family and friends will consider this cause on her behalf.