Tuesday, June 22, 2010


(Unrelated) Addition: The National Geographic Channel (276 on DirecTV) will be airing Extraordinary Humans: Skin this afternoon at 4:00 EST. Half of the episode is on a child with EB and half is on a child with Icthyosis, another rare genetic skin disorder. We actually have a friend, here in town, who has Icthyosis that we met after Jonah was born. Please watch or DVR if you can. Sorry for the late notice.

If you don't know much about the Bone Marrow Transplants being done as a (hopefully someday soon) cure for Epidermolysis Bullosa, please see Bella's dad's most recent post here.

It is amazingly clear, easy to understand and walks you through the basics of the process (as well as the risks). But he also does a great job of expressing the emotion that goes along with this journey they're on and how faith will see them through.

Daylon (the first JEB child to go through transplant) will undergo his transplant on Thursday of this week. He's already been undergoing Chemo for eight days (I think), so you can imagine the tough time he's having right now. He gets a one day "break" (tomorrow) and transplant will be on Thursday.

Bella is being admitted to the hospital today, and will begin treatments immediately. She will begin anti-seizure meds (to counteract one of the chemo drugs) immediately and chemo will start tomorrow. Her transplant is scheduled for July 2nd.

I know I've already asked for prayers for these kids, but I want you to really understand what they're about to go through and the toll it will take on them and their families. I want them to know they are not alone... so please, I'm begging you, follow their stories (
here and here) and keep lifting them up. This is a very long road they are about to travel. Assuming best case scenario, the kids' immune systems won't be back to normal for a year. And the stay in Minnesota will be four to six months at best.

I know we've never met, but I love you guys.

Praying for healing, strength, and peace...


Katherine @ Grass Stains said...

I've gone by to check in on both, and I left comments for each of them. I look forward to following their stories! Love you; can't wait to see you in a week!

Michelle Found said...

I can't believe how much Bella and Jonah look alike!!! Just like twin brother & sister.
~Michelle Found
Picton, Ontario, Canada

Nikki said...

We'll be in prayer for both kiddos (and for Jonah as well, as usual!)... and also praying for the day to come when all that is broken will be healed and made perfect by our Great Physician.

-The Starrs in Colorado

Ronda said...

Thanks for the info on the program, I've just set my dvr to record it. Prayers for Jonah, as always, and the other kids!

Loni said...

I literally got Directv less than 2 weeks ago (I would have no idea what channel this was if you didn't put it!!) and I can schedule to record shows on my phone, wahoo, just set this up to record and it starts in 4 minutes, perfect timing, thanks Patrice!!

The Millers said...

Hi, you completely don't know me but I found your blog in a round about way and have been reading for over a year now, so I feel like I "know" you :)
About the bulb syringe, how large do you need? There are many kinds on amazon of all places if you'd like to look there.
I pray for your famiy constantly and hope that everything continues to go well for you guys and all EB patients!

Island Jack's Travel said...

Thank you for the heads up on the NatGeo show. I was able to watch it and those kids were just amazing. They did not let anything stop them from having a full life. They certainly learned that in spite of everything the glass is still half full. I am praying for our little Jonah and all these children afflicted by these debilitating diseases.

Shaina said...

I met Bella's family today in the elevator as they were on their way up to the pediatric unit at the U of MN and her gorgeous big sister in the play room again later. They are a fantastic family, and I will definitely be following along to see how things go!

Lucy and Ethel said...

Patrice, I just found out about this :)



PS - Did you get my note that I DID watch the Bigfoot video? And, yep, that could have taken place here. Easily.

Patti said...

I just watched the amazing stories of Hunter and Garrett on the "Skin" episode. Thank you for telling us about it. Are the bone marrow transplants a necessary precursor to the gene transfer/ skin graft procedure they mentioned, or is an entirely different approach to a cure? I think the thing that struck me most (aside from these beautiful kids and their families and their unfathomable courage) is that the enormous effects HI and EB have on the body are caused simply by the lack of these two infinitesimal proteins. Our health (or sickness) is really that tenuous?? I'm struggling to get my head around that. And praying for a cure.

Shari said...

Patrice: I am so glad you post these other babies and children with EB that need prayer. I am not good at much, but I can pray for anybody who needs it. I have added these precious kids next to Jonah's name in my prayer journal. Bless you sweet Mama!

Laura A said...

Praying praying praying! I wish I had more to offer, but I know God will do much greater than I could even attempt to do.

Jackson (my 6-yr old) has been asking about Daylon (even though he can't always remember his name) -and has added him to our "EB list." Am eagerly anticipating the day when this list will shorten or go away, and that we can praise God for healing all these sweet children.

Thank you again for helping us to remember! Hope you've had a good day and that Jonah decided to eat.

Love from TX!

Anonymous said...

Thanks for filling us in. My daughter had a bone marrow transplant with umbilical cord stem cells being the donor. I know first hand how hard this is on a child...and I have experienced resting in God knowing this was one step closer to my daughters healing.

It is tough all over. I will pray for these sweet ones.

Kim M said...

Patrice, I've been following the BMT for EB kids since you first introduced us to Samantha. Drs Wagner and Tolar are amazing and I also pray for them as they struggle with the difficulties of BMT and EB.

I have learned to hate the disease but have absolutly fallen in love with these kids and families.

You are all amazing. Thanks for keeping the BMT trials in the forefront and adding to the prayer warriors for these kids and families.