Hi friends,
Jonah ate 23 ounces today. Most of it was a fight. He also ate at least a half a cup of Cream of Chicken Soup. He really loves that stuff. It's funny (and wonderful)!
We've had kind of a low key day. Matt's parents came up last night, and his dad helped us in the yard today while Granny had Jonah duty. I mowed the whole lawn by myself. Gerry offered to help, but I NEEDED to do it myself. It was a beautiful day, I rarely ever get to be outside, I desperately needed the exercise, and it felt great to do a project start to finish. The boys trimmed the bushes, did the weed eating, and put down pine straw. The yard is looking much better but...
I have big plans for when Matt's dad comes back the first weekend of May. I don't know if it will actually happen, but I'm wanting to do a small vegetable garden in the backyard, and do an accent fence with flower beds in the front. I am NOT a green thumb (I don't have a green thumb?... See? I don't even know what the correct phrase is). This should be interesting.
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So I found out about another baby with JEB today. He is nine months old, and his name is Daylon. He lives in California. He has Herlitz which means his prognosis is not good. He will be the first Junctional baby to have the Bone Marrow Transplant at U of M. His three year old brother is an identical match. Up to now (I think Rafi is patient #8 and McKenzie is #9) they have all been RDEB. His family is trying to raise money for the transplant (the closest possibility to a cure there is at this point). You can read about him and donate here, and you can become a Fan of his Facebook page here. Please help if you can. I know we all feel so helpless when it comes to these kids' suffering, but you could help save his life. That's pretty big. And if you live in the Corona area, there will be a Walkathon and Carnival on May 1st to raise money for his medical bills.
10 comments:
I dont have much but I made a small donation to his family. I hope they get the money they need for the transplant.
Lisa Greene
He was born on my birthday! I will be making a donation as well. I hope and pray that they get enough money and that the transplant is a success.
Praying for Daylon! Glad you had a good day and got to be outside. Hope you have a terrific Sunday at church tomorrow!
Love,
Laura
Patrice, thank you SO much for sharing Daylon's story. I actually live in Corona, and when I read that part about living near Corona in your post, my heart almost leaped out of my chest. I have felt such a desire to help where EB is concerned, but didn't know of a local outlet to help in addition to DebRA. I am trying to organize a group to walk for Daylon. Please keep us in prayer that we can help his family as much as possible.
I becaome a fan of Daylons FB page and also made a donation. Thanks for showing me the way to Daylon!!!
I also wanted to say I hope you enjoyed your time outside in the yard. Patrice you & yours are forever in my prayers. I think of you very often.
Patricia
Miller Place, New York
Thank you for sharing Daylon's story--the facebook page has been hit by so many of your followers. It is truly encouraging. Prayers and thanks to Jonah and your family.
(--A friend of the Edlings)
Thank you for telling your readers about little Daylon. We have been friends with his grandmother for years. They are wonderful people and as you know... nothing is worse than watching your baby suffer. We are praying that Daylon and all the babies like him will be blessed and cured.
I wish you the best with your baby Jonah. I will add him and your family to my prayer list.
Thanks again for your concern for Daylon. How wonderful for you to look beyond your own pain and reach out to help another in need.
May God bless you, Lura
p.s I put a link to your blog on my post tonight. I asked my readers to pray for your little Jonah too. Best wishes and good luck. Hugs, Grammy Lura
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