This is our sweet little Angel, Emma. Her journey began on January 22, 2005. Soon after she was born, we were told that the red mark on the left side of her little face was not a bruise, as originally thought, but it was a birthmark called a port wine stain. We said “A port what?” The next day a doctor from our pediatrian’s office came to visit and proceeded to tell us that Emma could also have glaucoma in her left eye as well as a condition called Sturge-Weber Syndrome. (SWS) We were devastated. Not only was this a birthmark on her face but a “condition” that could go along with it? The first few months of her life consisted of Dr. appointments and lots of worry on our part. We were eventually told that Emma only had about a 15% chance of having SWS so that did give us some relief. Unfortunately, at 10 months old, an MRI confirmed that Emma did have a lesion on the left side of her brain and would, at some point, start having seizures. About 2 ½ months later, soon after her first birthday, she did have her first seizure. After being hospitalized for a few days, we took our baby girl home and started her on daily meds to help control the partial seizures.
It has been a whirl wind of emotions since then. We have a great team of doctors who care for Emma at Doernbecher Children’s Hospital. Emma has now had 13 laser treatments to lighten her birthmark. We see the ophthalmologist every 6 months to make sure there are no signs of glaucoma or other vision problems. We see the neurologist every 6 months to monitor her motor skills, mental development and medication level. Emma has been amazing through it all. Every ER physician and technician we have seen has commented on how brave and cooperative Emma is. She is the strongest person we know and she is only 6 yrs old! And talk about spunk!! She definitely keeps us on our toes. We are OK with that though!
We feel very fortunate that Emma’s seizures have been controlled very well with medication. She has only experienced 5 seizure episodes, thus far. She has met all her milestones and her vision is good. Although, we are now dealing with migraines occasionally, we do feel we are one of the more fortunate families out there. There are so many other Sturge-Weber families who are dealing with seizures daily and an array of other medical conditions connected with this syndrome. This is why we need your help.
The Sturge-Weber Foundation is a non-profit, international organization to help support and educate patients, parents and professionals who are affected by or who are caring for patients with this syndrome. The foundation also has various research studies taking place which will help find more effective treatments for our “Angels” and maybe even one day find a cure for this syndrome. SWS has been deemed as an Orphan Disease by the National Organization of Rare Diseases. SWS has not been researched by doctors and the medical community as much as others diseases because of its rare cases. About 3 and 1000 babies will be born with a port wine stain birthmark. Of these children, only 8%-15% will be diagnosed with SWS. The Foundation’s commitment is to improve the quality of life for those affected by SWS and give guidance to those who are caring for them.
The last two years we have felt that we really wanted to do something to help raise awareness and help raise money for this wonderful foundation that has helped us so much along our journey. We just never felt emotionally strong enough to do any kind of fund raising. When we saw this new fund raising idea, we said “This is it! We can do this!”
We are asking you to please help us raise money for this great cause. Even a very small donation will help and will be greatly appreciated. Donating through this site is fast, simple and totally secure. 100% of your tax deductible donation goes directly to the foundation and will be put to great use!
Thanks to all our generous family and friends, Emma will be featured in the Sturge-Weber Foundation 2010 "Faces of Miracles" calendar. The top 12 fundraisers of 2009 have been given their own page in this awesome calendar. This is another great fundraiser the Foundation has created to raise awareness and raise money for research. Please remember the Sturge-Weber Foundation when making your donations this coming year.
Thank you so much for taking the time to read our story. Thank you also for your support and continued prayers for our Angel, Emma. Please do not forget to forward this website on to other family members and friends who might be interested in helping us fight this syndrome and raise awareness!
Mike & Dana Henninger
To learn more about Emma’s condition please visit www.sturge-weber.com