Wednesday, October 28, 2009


You may know that Debra has a New Family Advocate program to help families that have new EB babies. This program was such a help to us and I know it has been beneficial to other EB families.

Well, on Thursday I got a call from Leslie with the New Family Advocate program and she said that there was a new EB baby born in Sterling, VA, just about 30 miles from us. I called the family and was able to go out and meet with them on Sunday afternoon.

For a little bit of background, this is the third child for the couple…it is also their third child with EB. The couple is from Pakistan and unfortunately the hospital in Pakistan didn’t have the means to properly care for a child with EB, and the first two passed away at 8 weeks and 2 weeks respectively. With the third child they are very thankful to be here in the US where they have better medical care and doctors that understand the disease. They have been seeing the same dermatologist that Ella sees.

I went to meet the family at their home on Sunday afternoon. Their sweet little girl is so tiny! I took a box full of supplies that we use on Ella. They had been using what the hospital gave them, and while it’s fine for what hospitals usually use it for, it isn’t good for EB kids. I was able to talk with the family and tell them all about Ella. I took tons and tons of pictures with me so that they could see Ella when she was born and then see her now as a big 2 year old. I bragged a lot (I’m a mom…it’s my job to brag) and told them all about Ella and how smart she is and how active she is.

The whole family came over to meet me. The baby’s grandmother, and 6 cousins were all there with the baby and her parents. They fixed a wonderful lunch! They said “I hope you like spicy food!” Then laughed…that should have clued me in. Luckily I do like spicy food so I enjoyed the meal. They even gave me left-overs to bring home to Joe and he loved them too! Maybe I need to learn to make Pakistani food.

After our meal all the women went upstairs so I could show them how to protect the baby’s wounds. The mom of the baby, her mother-in-law and her 2 cousins have been doing every thing they can to take care of the baby, and they all wanted to see the wound care so that they could help. They said it was really helpful and kept calling me a professional. I told them that I’m just a mom who has lived with the disease for 2 years. Soon, they’ll be professionals too. They were the most excited about the new wound products I took them. I remember when we got a box of wound care supplies from Debra shortly after Ella was born. The new stuff seemed so revolutionary to me! Compared to the stuff we had been using from the hospital, the new things were incredible! This family felt the same way. I had forgotten how difficult it is to change bandages on a newborn baby. Ella definitely fights us, but she will at least straighten her legs. Little 2 week old babies just want to stay curled up in a ball.

After the bandages were done we headed downstairs for dessert and tea…yummy Baklava and this other dessert that they described as “sugar that has been fried.” I’m sure it was VERY healthy. Of course I spilled the tea all down the front of my shirt. Oh well.

I am so glad that I was able to go and meet with this family. I remember vividly how scary the first few months with Ella were, and I hope that by meeting with the family I was able to give them some hope.

Please keep this family in your prayers as they start a new journey. Specifically, pray for the baby’s bottom. It is her most severe part and diapers are very hard for her to wear. They had a biopsy done on Monday and are awaiting the results.


Ronda said...

That's so wonderful of you to go and share your knowledge with another family. I'll be praying for their little girl and Joella, as always.

Anonymous said...

You are an inspiration!

Emilie (ellen's friend)

Gale Alexander said...

Dear Daughter...I'm so proud of you!
You shared your expertise, energy, encouragement, and hope with this family.

Anonymous said...

You are a blessing to this family. I know they are glad to know you and will benefit from your expertise.

Jessica said...

This family will always remember the practical tools that you gave them to care for their child. How fortunate they are to have a "pro" help them out! What an excellent community you all have with DEBRA.