Today is the first day of international EB awareness week! It runs every year from October 25-October 31. In years past, I have done a blog post every day on some EB related topic. This year will be no different!! I should have planned little better on topics but with 4 kids and a job it's hard to do that sometimes!
This first post will be a reintroduction of our family. Though our story is scattered through out this blog and on our family blog: Four Busy Bees and Two Butterflies, I know people don't always have time to search thru archives. So I will do a little introduction of our family:-)
I am Sara, I am 36 and I was born with Epidermolysis Bullosa Simplex Dowling Meara or EBS-DM for short. I have a defect in my Keratin 5 gene meaning my EB is genetic and is not contagious. But it also means it will never go away even there are times I have no visible blisters or wounds. I have been married for almost 13 years to a great guy named Joe:)
Our oldest is Sami and she is 11. She too was born with EBS-DM. She is a typical 11 year old who enjoying singing, acting and drawing. She goes to a regular school and has many friends.
Next came Garrett and he too was born with EBS-DM. Sadly he developed some complications during his 2nd week of life and passed away when he was 12 days old. Garrett's House was created in memory of him to further educate the world about EB and to help the families of other EB babies. This coming December Garrett will celebrate his 9th birthday in heaven and his 9th angel day as well.
Summer was born 15 month later. She is now 7 years old and loves to read and play on the computer. She does not have EB!
19 months later came Gracie who is 5 and just started kindergarten this year. She has many friends and loves to play with her dolls. She too does not have EB!
Then came Joey. He was born in March of 2011. He was born with EB and was the most severe of my three:( He was born with no skin from the knees down on both legs along with some missing skin on his wrists. When he was 10 days old he started having breathing problems and was admitted to the PICU. Within hours of arriving to the hospital, he went into respiratory failure and spent 7 days on a ventilator and almost needed a trach...but thankfully the blisters and swelling had gone done enough where he didn't need a trach. But it was discovered that he had severe acid reflux. The reflux was causing him to aspirate when he swallowed. Which in turned caused damage to the back of his throat spreading into his upper airway. (which is why he stopped breathing) He could no longer safely eat by mouth and required a feeding tube to be surgical placed in his stomach.
Today Joey is 2 1/2 and is ALL boy! His skin is doing much better but he is still wrapped from his chest to his ankles for his own protection. He is able to eat by mouth now but 80% of his daily nutrition is still thru his g-tube. He loves Mickey Mouse, Sponge Bob, riding on his sister's scooters and swinging on his swing. He loves to play with cars and climb on anything thing he can reach!
My hope that this blog helps spread awareness and educate those about EB and to make the journey of those with EB a little easier to navigate!!