Our friends, Sarah Miller, and her daughter Ellie, are selling note cards to benefit CCA. A private donor will make a $13 matching donation to CCA for each purchase made. Each $30 order will net CCA a $26 donation to help kids receive the medical care they need, quality, medical information, and the distribution of the book, "Wonder" to schools around the country.
Please read this family's story below.
Donate by following this link!
Donate by following this link!
At just 2 months old, our oldest child, Ellie, was diagnosed with a rare skull deformation called Metopic Craniosynostosis.
When a baby is born, the skull has open fibrous sutures (2 on each side, 1 in front, and 1 in back) which allow the skull to expand while the brain rapidly grows during the first year. By 1 year old, these sutures have usually fused together into hardened bone. Craniosynostosis is a condition in which one or more of these sutures prematurely fuses before it is supposed to, causing the skull to grow abnormally and the brain to not have enough room to grow. This deformation occurs in roughly 1 out of every 2500 births and has many different variations. Ellie’s specific form was a very severe case of the front/facial suture (the “Metopic” suture going up her forehead) to be closed upon birth or very soon after. This caused the front part of her skull unable to expand, constricting her frontal lobe and causing her head to have a triangular shape by 2 months old – which was when it was noticed by our pediatrician.
Ellie needed to have an invasive, 10 hour long surgery on her 5 month birthday (they would have done it earlier but she was too small, only 13 pounds on surgery day). Ellie’s “cranio-vault remodeling” (CVR) surgery happened on March 19, 2014. It took 10 hours, by her neurosurgeon and plastic surgeon at the Cleveland Clinic, and involved a very expensive “first haircut” resulting in a now hidden permanent zig-zag scar on top of her head from ear to ear. A large part of my tiny baby’s skull was removed, reshaped, replaced and screwed back together. We were in the hospital for 5 days, most of which was spent in the ICU, with our unconscious baby, bruised and swollen, drugged with morphine and the rhythmic sound of the breathing machine keeping her alive. The day when she finally woke up slowly, OPENED her eyes, looked at me, and cooed softly, is a day just as precious to me as the day she was born. Ellie came home with a tube still in her head for a few days but was back to her happy self and a whole new look (which, as a mother, also took a little getting used to…). She is so strong. It is crazy how, in just a matter of days, her resilience and smile made the whole ordeal seem almost like just a dream…
Unless you know about it, looking at her, you don’t know what she went through 4 years ago. Ellie is beautiful, loving, and sharp as a tack. Although still present, her condition is hidden to most, and we know how lucky we are that this was ALL we have had to encounter.
Families like ours are receiving this news all the time about their new baby. Many times they are completely blind-sided by the news like we were; thinking our child was ‘perfectly healthy’ going into our standard 2 month check-up only to find out there was a massive surgery in our near future.
For Ellie, we are raising money for the Children’s Craniofacial Association which is a non-profit organization dedicated to improving the quality of life for families affected by facial differences. CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to these conditions. This is a fantastic organization and one of the many we used throughout our cranio journey.
Cards for a Cause is an amazing fundraising program from Usborne Books & More and we are using them to raise money for the Children’s Craniofacial Association. Each box of greeting cards costs $30 and includes 30 individually cellophane-wrapped beautiful cards, many with special embellishments. You can choose “Thanks & Blanks”, “All Occasions” or “Kid’s Birthday”. Designs are not guaranteed and will vary. With each box sold, $13 will be donated to the Children’s Craniofacial Association. We have also partnered with my husband’s company, Graco Inc. who will be MATCHING every $13 we raise for CCA! So, that’s $26 raised with each box!
If you live in the immediate Stark County area, I can personally deliver your box of cards. OR you can pay for additional shipping
Please help us in spreading our story. It was very difficult for us to find support and information about Ellie’s condition at the time. Craniosynostosis awareness is very important and your donation to the Children’s Craniofacial Association can help families like ours during this stressful journey.
Thank You~ Sarah