Ryan to Remain Seizure Free! 18Q

Ryan has been our strong little fighter from the moment he popped into this world 6.5 weeks early, and especially now as an amazing 5 year old boy recovering from brain surgery. Some people might say he was dealt a rough hand, but Ryan's mom Robin and his big sister Britney would say they've been given the opportunity to live with the fullest appreciation of what life truly has to offer. At 8mths old, Robin noticed Ryan was not as far along developmentally as other kids so he started PT/OT/Speech Therapy. When Ryan was 2 years old, he started having seizures about every 3 months, the seizures eventually happened more frequently and he was diagnosed with Epilepsy. After some extensive testing, when Ryan was almost 2 1/2 years old, he was diagnosed with Chromosome 18 Duplication, Deletion and Inversion (18Q Mosaic). Q18 can affect many parts of his global development: he was verbal without saying actual words, he had his own language, he didn't stand until he was about 18 months, he was slow to walk, and he has problems with his ears, feet and eyes. Ryan had such increased seizure activity over the past year (multiple seizures a week), that his group of neurosurgeons started tracking the seizure patterns inside his brain, with the intent to remove the portion of his brain that was sparking the seizures. BRAIN SURGERY: It was a terrifying thought for our sweet little boy to have to go through. After weeks in the hospital, Ryan showed enough brain seizure activity to allow the surgeons the information the needed to confidently perform the removal of Ryan's front temporal lobe. Surgery was scheduled for the first week of December 2014; and has been a great success! Ryan continues to recover and gain his strength. Ryan hasn't had a seizure since the surgery! We are considering this a huge success, and thank everyone for their support. We've had many people ask if there is anything that they can do to help. We have asked for prayers and guidance with all that He has planned for Ryan. We appreciate the many prayers going from your mouth straight to the big man's ears. We feel them! Robin's sisters have started this page in an effort to support Robin, Britney and Ryan, since so many of you have asked where you can donate money to ensure it goes to help Ryan. As you may know, Ryan has relatively good medical insurance, so the bulk of the surgery/medical bills should be covered. The funds raised here are intended to help with: * the yearly Chromosome 18 Conference that Robin attends to gain knowledge of the 18Q research. The conference last year cost more than $3,000, including hotel and travel expense. * any additional expense accrued by the surgery/medical treatment for Ryan that isn't previously covered by the insurance. * fun family activities - a possible family vacation, because Lord knows Robin, Britney and Ryan have been through alot this year, and could use some celebrated time together. We appreciate all of the support and love that you have shared for Robin, Ryan & Britney. We all feel so very blessed to have you apart of their life and story. Thank you! God bless you and your family! Shalom! Katie & Abby On behalf of Robin, Britney & Ryan For more information on Ryan's status please follow Robin's blog at: http://ryans18q.org/