Eilan was born with a birth defect called craniosynostosis where the soft spots and growth plates in his head have fused together prematurely. Thankfully he has met all of his developmental milestones up to this point but as his brain continues to grow it will push against his misshapen head. Without the soft spots and sutures that allow the bone to grow and expand, pressure begins to build up on the brain and can cause developmental delays and even permanent damage.
While Eilan was born with this defect, it wasn’t diagnosed until he had a CT scan in June 2022. Now the Ware family are scrambling to prepare for surgery before the pressure on his brain is too much.
Day to day life with Eilan is unpredictable. His bright eyes and big smile can light up the whole room and his giggle will make your heart burst with joy! But there are days he is clearly in pain and just has to be held. He’s almost a year old now but still nurses around the clock because he doesn’t know how to self-soothe and he often won’t sleep unless mama is holding him or close by. These are precious moments for sure but it means that Melanie isn’t able to work.
When Melanie got the surprise of a lifetime and discovered at age 42 she was pregnant with Eilan, baby number 6, she was the sole provider for the family because Jesse had sustained an injury that left him unable to continue his law enforcement career. Thankfully Jesse has gained much of his strength back now and works hard to keep bills paid and food on the table. Unfortunately the job Jesse has doesn’t provide health insurance.
Melanie has researched and talked to several craniofacial doctors across the US. She and Jesse have always taken a holistic approach to their family’s health and while surgery seems far from that realm they still wanted to find a doctor that has similar beliefs about the body as a whole system. That is what lead them to Dr. Fearon in Dallas Texas at the Craniofacial Center. Dr. Fearon specializes in craniofacial surgery and is dedicated to continued research in his field. There are many things that set him apart but some of the big deciding factors for the Ware family are:
– Baby’s blood is collected, cleaned and cycled back into his body reducing risks and making it easier on baby to recover.
– No dissolvable plates and screws in baby’s head. Dr. Fearon uses baby’s own bone instead.
– Because Dr. Fearon is highly specialized the procedure is faster and generally has a faster recovery time.
When using plates and screws the optimal time to have the surgery is before 1 years old when you are growing the most bone. Eilan is nearly outside of that ‘magic window of time.’ However the method Dr. Fearon uses is best performed between 11-15 months – perfect timing for Eilan!
Many friends and family have asked how they can help the Ware family. Here are the best ways to get involved:
– Keep Eilan, the Ware family and their team of doctors in your prayers!
– Grab a T-shirt or other fun merch in the Eilan Time store (all proceeds go directly to Eilan’s medical expenses.
– Make a tax-deductible donation right here in Eilan’s name to the nonprofit Help Hope Live.
– Share Eilan’s page on your social media platforms so others can consider a donation.
Melanie and Jesse have chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. They went through an application process with the organization to verify medical and financial need so that contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the GIVE button.
For more information, please contact Help Hope Live at 800.642.8399.
