Let me introduce my beautiful and slightly crazy family. It consists of me (Hayley) or mom and I am a Pediatric Oncology Nurse at Children's Medical Center of Dallas and my husband (Michael) is a middle school science teacher. I have three children. Gabriel Thomas is 7 and Adeline Grace is 6 and then there is Miss Millie. Amelia Claire was born on 09/02/14 with a port wine stain (birthmark) on 80% of her face. This is an indicator of the syndrome she has which is called Sturge Weber Syndrome. All our ultrasounds were normal so this was a complete shock to us. Sturge Weber is a malformation of the capillaries (which are vessels that carry blood) so she also was diagnosed with glaucoma of her right eye and then she has full brain involvement on her right side of her brain. Because of the brain involvement she has seizures and has had a stroke. We have been hospitalized several times and have had many surgeries. Her future is unknown and can vary from completely debilitating to having a normal life. Here is what I know the future holds for her:
1. Every couple of years she will have glaucoma surgery because there is no cure 2. She will have laser surgery to remove the port wine stain probably about 30 treatments spread over several years 3. Due to the stroke she has lost her left visual field so she will have half her vision 4. Due to the stroke her left side of her body is very weak so she will need lots of physical, occupational, vision, motor and orientation, and speech therapy 5. Right now we have an NG tube but we will be getting a G tube button here soon 6. Last but not least she will have a hemi hemispherectomy which is the removal of half the brain which in her case is her right side of her brain. This will happen in about a year or so.
Since I work for Children's hospital facility fees are actually free of charge and we have had about 12,000 in other medical fees which we have been able to pay for. We would love to be able to get her a seizure/service dog for many reasons but mainly so she can have a friend. We all the disabilities she is going to need one. They are about 10,000 average and we have the 2000 dollar deposit ready but we also need to get a used van for all her equipment. We have a very blessed community and support group that are going to help us make t-shirts to raise some money but a little extra couldn't hurt. I know there are many other deserving families and I am so grateful for this opportunity.