Please help!

I don’t usually post pleas on this site, but felt it was appropriate.

We have two friends who  specifically  are in need of help. Good people. I hate to do nothing for them.

Our first friend is JJ (Jared Joshua).

Jared was born with congential hydrocephalus and arthrogryposis. Obviously I know his family through our arthrogryposis connection, mostly on Facebook. Like Laelia he has club feet and is unable to move his legs, but unlike Laelia he also has severe hearing loss, a g-tube and the family just found out he is missing two important structures of his brain. Between that and the fact that he started having seizures, his family has been thrown for a loop. Only a couple days ago did Jared double his birth weight. He’s almost a year old.

They would like to take him to the Family Hope Center which specializes in children with brain injury. They need to raise about $4,000 to cover all expenses. Their Pay Pal account is jjo91009(at)gmail.com. You’ll have to use the actually @ symbol there instead of (at). Or email me at recordsky(at)gmail.com and I can get their home address to send a check to Jared’s mom if you’d prefer. Every little bit helps!

By the way Jared is adorable! And his parents have some of the best attitudes and senses of humor. This family deserves good things!

Also… there’s Kourtney!

If you remember a friend of mine, Kristin, who has a daughter with CF. We did a walk for CF with this family that I blogged about a while ago. Kristin was there for us when Lali was first diagnosed. And just the other day she wrote me something that left me stunned and in tears. Well Kristin’s friend, more specifically her daughter’s friend, has been in the hospital for a while now. Her name is Kourtney Najjar. I wanted to share her story as I got it: day by day, piece by piece. (Times are aproximate!)

July 21st: Kourtney checks into UCLA for multiple transplant surgery.

1:00 pm: Her organs were in place! She would still be in surgery for several hours. And then in a drug-induced coma for a couple days as they left her stomach open for more work on her bladder.

3:30 pm things were going beautifully then her new intestines started to clot.

6:00 pm the clotting had stopped and she was in ICU.

July 22: Kourtney had been in surgery for most of the day and was now in the ICU.  Today is her 8th birthday.

July 23rd: Kourney had high blood pressure through the night, but they prepare for more surgery today. On the way to the OR she had breathing trouble and they had to bag her. They pray her intestines will continue to cooperate.

4:00 pm they finished surgery but were unable to close due to swelling.

July 24th: Kourney’s new pancreas is not cooperating; it doesn’t like sugar. They upped Kourney’s pain meds.

July 25th: Kourney is no longer incubated; she’s just on oxygen! A blessing.

July 26th: They found a burn on Kourney’s back that they suspect was from the operating table.

July 27th: Kourney has an infection. White blood cell counts and liver counts are down.

July 29th: Kourney is rushed to the OR because of infection and pain issues. In the OR they find internal bleeding and infection. Her new bowl is bleeding and her stomach also. They give her blood and it helps. She’s incubated again.

2:00 pm: Kourney’s stomach is extended and she has a lot of medical intervention to keep her going. The decision is made to keep her unconscious for 24 hours.

July 30th: Kourney continues to bleed from her large and small bowl. Her parents wait to see if she’s in rejection.

2:30 pm: Bleeding slows. Kourney gives her mom a thumbs up. But her kidneys have taken quite a hit.

July 31st: Doctors think bleeding has stopped. They consider taking out her breathing tube.

August 1st: Kourtney is in a LOT of pain, and she’s puffed up from fluids.

August 2nd: Kourtney is in a scary place. The fluid build up in her body has caused renal failure. She was in too much pain so she was sedated.

3:00 pm: Kourtney’s bowls are in rejection. They have to put her back on the transplant list.

10:00 pm: Kourtney’s kidneys are now failing.

August 4th: Kourtney goes back to the OR to get a line to start dialysis. Her mom is so stressed out that she’s sick.

9:00 pm: Kourtney’s new line is not working. It’s going directly into her heart! They need it fixed ASAP.

August 6th: Kourtney is bleeding, in pain and going through rejection.

August 10th: Kourtney crashed during surgery. Things are bad, but she lived.

August 13th: Kourtney went in for emergency surgery. She has another perferation in this new bowel, and they were not able to save it. She already was re-listed, but now is more urgent. Kourt is in a lot of pain, so the docs have put her on high doses of fentenayl.

August 15th: Kourtney spikes a fever of 104. Doctors believe she is septic.

Yesterday: Kourtney’s kidney’s start to work again! She starts to put out a small amount of urine. She has a fever, but things are looking up.

To continue to follow her story you can friend “Kourtneys Krew” on Facebook.

During all of this Kourtney’s friend Emma was admitted into the hospital too. Also Kourtney’s family found out that a beloved nurse friend had passed away. Dark times.

As Kirsten has said, “The cost of keeping Kourtney going shouldn’t have to be financial, this family has already paid a price emotionally.”

I have permission from Kourtney’s mom to share the following address if you wanted to send them a check to help them survive the next month. They do need it!

Kourtney Najjar
1260 Veteran Ave Apt 206
Los Angeles, CA 90024

Thanks.

2 Responses to “Please help!”

  1. Anonymous says:

    Hi Lexie,

    I would love to help but from what I read it would be better to donate to the parents directly so I don’t have to use paypal. Thank you for Kourtney’s address. could you please post Judith & Randell’s or e mail it to me? I may need Jared Joshua’s address also. i haven’t checked the site you gave yet. thank you very much –you have such a tender and compassionate heart!!!

  2. Kristin says:

    I have wanted to comment since you wrote this, but my phone would not allow me to do it. So now I’m on the laptop and actually remembered to visit!

    Thank you thank you thank you thank you for posting this! All of the extra prayers going to Kourt produced a miracle. Kourtney is no longer in rejection, no longer intubated, no longer in danger of kidney failure. It is indeed time for Thanksgiving! Kourt has a long road ahead and her family continues on.

    God is so good!!

    Alexis, thanks again for this call to prayer and to help financially. This family desperately needed and continues to need that support.

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