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Charlie's family needs your help!

$5,000 of $5,000 goal

Raised by 50 people in 5 months


Charlie suffers from Erythropoetic protoporphyria.  Erythropoetic protoporphyria is VERY rare.  Affecting roughly ONLY 200 people worldwide.
It is a metabolic disorder that essentially makes her VERY allergic to the sun. 

Most people with this disorder have one copy of the gene that doesn't work, but the other works to some capacity and they are able to metabolize porphyrins. In Charlie's even more rare version of EPP, both copies of the gene do not work at all and are causing the porphyrin build up in her liver. (This is a rough explanation. Science can be complicated!) This build up will occur despite her parents best efforts to protect her from the sun and UV lights. However, exposure will increase the speed of the build up and hasten the damage.

Charlie needs a bone marrow transplant.  She will be in the hospital for a minimum of a month. Because of this extended stay, Charlie's parents will have to take time off work to be with her. This campaign is to raise some money to help Charlie's family cope with the bills and expenses during her stay. 

The hope is that a BMT (bone marrow transplant) will reset her blood system and give her body the ability to create the enzyme and be able to break down porphyrins. And if it is done soon enough, her doctor believes it may save her liver from needing a transplant too!

A rough timeline, if all goes well, the earliest BMT date could be in September. They have already sent Charlie's samples off to get sequenced and find a match. It takes a few months for them to get it all sorted.

The procedure will be a minimum month long hospital stay if it all goes well. Longer if complications or GVHD arise.  Afterwards they will need to go to the hospital 3-5 times a week for a long time. It is a long procedure. 

So, in the end, porphyria sucks. But Charlie kicks ass.

Keep us in your thoughts and prayers.
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Message from Charlie's mom. Please continue to pray and share.

This may be long, so bear with me.

For the past few weeks we have been attending many pre-transplant appointments. Wednesday we had a few at BCCH that we needed to attend. Amongst these were respirology and a meeting with her transplant team. When we got to see her respirologist, they noticed that she was breathing rather quick, but as Charlie had been terribly upset with her appointments they weren't too sure it was relevant. After this we went to meet with her transplant team and Charlie was still breathing quick, and she had become hot and clammy. One of the doctors decided to play it safe, and have Charlie admitted to see how the night went. They did a few blood labs, a chest x-ray and some swabs at this time (they are SO efficient!) If it was nothing, it was nothing, and if it became something it saved us from having to drive all the way back and go through emergency.

It very quickly became something. Charlie turned out to have a bad case of pneumonia and was rather anemic, as well her liver was having a tough go keeping up with what was going on. Prior to this she wasn't displaying any symptoms of being sick. So as I am sure you can understand, we were quite shocked!

Anyways, we have been at BCCH since Wednesday and are still there. Little Charlie has been through the ringer with more blood labs, a ton of antibiotics and 2 rounds of blood transfusions.

Today, she is stable and quite alert. She is chatting and playing. Her colour is back, and her blood tests are looking much better. Which is very awesome!

However, we are far from being out of the woods. This infection came on fast and quick, and it showed her doctors her liver is not able to handle a bone marrow transplant at this time. Right now she has an immune system to help, if she got sick while during the transplant ordeal, she wouldn't have it. So, it is a small blessing that this happened now and not in three weeks.

That being said, what will need to take place before her bone marrow transplant is that unfortunately Charlie will need a liver transplant first. Unbeknownst to us, they do not do those at BCCH! In fact, once Charlie is better, they will fly us to Edmonton, as that is where they do organ transplants. Who knew?

There is no strict timeline, as there are, once again, a lot of moving parts. But ultimately it is up to Charlie as they need her well enough before we head there. Once there, we will very likely be there for a few months. Pretty crazy hey? We are still trying to wrap our heads around it too.

We are grateful for good friends and family who have been helping us immensely through this, and continue to do so. The food, and love have been priceless. There is still SO much more to do to get our little girl to the finish line. Thank you all for sticking with us and continuing to pray and send the good vibes.

I'll post more updates as things progress and change.

xoxo

Bekah, Kelsey and Charlie
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Some unexpected turns have happened over the past week. I will be doing a full update as soon as I get all of the information from Charlie's mom. Currently, Charlie has been admitted into Children's hospital for now with pneumonia and enlarged liver. Looks like a liver transplant is imminent for her. Will post more as I get more information. Please continue to support Charlie and her family with your prayers and finances.
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Here is a post from Charlie's mom:

Once again I want to share my deepest, and immense gratitude to all of you. Your generosity blows me away! This is an incredibly humbling experience. I've always seen friends and families post and talk about their friends or family go through some crazy medical stuff... And I never thought it would ever be us. Yet, here we are. And my heart swells with learning how many people are rooting for us and our little Charlie! She is so loved by so many, and I couldn't be more grateful. Every single one of you and your prayers, love and support are felt. Thank you for standing with us as we go through such crazy times ahead.

Another update,

For those of you who didn't catch our earlier update, Charlie did well with her heart procedure. It was considered a failure as no device could be placed. However, the one big hole is actually 3 small ones, so they learned something regardless! And this will help them know how to help Charlie better when it comes time to place her central line for the transplant. (This will be a direct 'line' to her heart where the chemo and other medications will be delivered. The drugs are too hard on small veins.) She only has a small little wound on her thigh from the catheterization which is healing nicely. She is back to being spunky and silly. We are still waiting back to hear from her team if they have found a donor. Hopefully we will know more in July.

Thank you again, you guys mean the world to us.

<3 Kelsey, Bekah, and Charlie
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