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James and Lori Erickson- Camellia’s heart

$13,335 of $20,000 goal

Raised by 205 people in 5 months
Camellia was born with Erythrokeratodermia Cardiomiopathy Syndrome. This condition causes her heart to be very weak and will likely not last much longer. The doctors thought it was best to move her to MUSC to get the best care and prepare for a possible heart transplant. Please pray that she would be strong enough for surgery and that she will continue to grow. Consider donating to help us with the expenses of traveling and medical costs. Thank you!
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3/4: It has been a while since I have done an update! We have made so much progress over the past couple weeks. Camellias heart has actually improved to and ejection fraction of 57%(which is close to normal)!!! She’s been able to sit up and look around which is amazing considering she has been laying in her bed for so long. She has been happy and laughing and playing with toys.

Over the weekend we transitioned to the regular floor of the hospital and it didn’t go so well. She got really dehydrated and fussy. Last night we transitioned back to the PICU and she got her fluids and is getting back to normal. We are working to figure out what caused this and what medicines need to be tweaked to find the right balance. We were scheduled to have her G tube surgery today but that has been postponed for now due to her electrolyte levels being a little crazy. Hopefully we can get her back up to speed quickly and get that surgery rescheduled to be able to make one step closer to going home!
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During our 10 days at the Greenville hospital they discovered a few things on top of the obvious skin issue that she’s had since she was born- they found GI problems(fat in her stool indicating improper digestion), thyroid problems and they noticed that her heart was dilated(the first ECHO test showed that it was functioning at 40%). On Friday Camellia was sedated and put on a ventilator because she was struggling to breathe. This is also when we got the genetic test results that she has Erythrokeratodermia cardiomiopathy syndrome . They did an echo(heart ultrasound) on Friday and saw that her heart function had dropped from 40% to 25% causing them to think that her heart was declining extremely rapidly and she may need a heart transplant. This is why we made the decision to come to Charleston. Friday was such a difficult day. Hearing that your child has a disease that is so rare that no one really knows much about was one of the hardest things I’ve ever had to process. It was so scary making the decision to come to this place where I don’t know anyone and leaving my home behind without knowing when I’ll be back. But we knew that we wanted to fight for her life and this was the best way to get the answers and help that we needed. So we came to Charleston. Camellia was flown here by helicopter on Saturday morning. The aching pain of packing and leaving the room and hospital was so difficult for me. Thankfully she made it to Charleston safely yesterday afternoon.

Today I got to meet her doctors and nurses. I also met the GI doctor and the cardiologist. The GI doctor said that he is not sure if the pancreas issue is even accurate or if there’s something else going on so they are researching and determining what test or procedure to do to work out that issue. The cardiologist gave us some relieving news. She told me that the echo that they did today showed that her heart has come back up to 40% She is thinking that camellia will not even need a heart transplant. And, honestly, she told me that camellia won’t qualify for one in the state that she’s in with the risk of skin infection. She said over the next several weeks they hope to wean her off of the IV meds and get her on a couple meds that she will have to take for her whole life that will help her heart to function as well as it can(still not as good as a normal person, but as best as her heart possibly can) , and we will have to monitor her and get frequent check ups and all of that. We don’t have a ton of definite answers still, besides the genetic test, but I am SO glad that we came here to Charleston. I feel really comfortable with the doctors and nurses. They are taking amazing care of her. I feel good knowing that if her heart did begin to rapidly decline that we are in the right place and they have the knowledge and equipment to keep her strong. We feel very hopeful today for the first time in a while♥️

Thanks to EVERYONE for all the messages, prayers and donations. I would not be able to get through this situation without the love and support of our friends and family. I love you all so much. Keep praying for our baby girl. We have hope that she can make it out of this and that we will get to see her again as her happy self. We miss our seeing sweet Camellia happy and smiling and want to continue to fight to give her a chance to live her best life. ♥️ Praise God for what He has done and continue praying that He will give us strength and wisdom.
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$13,335 of $20,000 goal

Raised by 205 people in 5 months
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