FightRareKidneyDiseaseC3G

  • Iron Station, NC
  • Medical
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Created December 1st, 2025
by Lynette Kightlinger
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FightRareKidneyDiseaseC3G

My name is Lynette. I am a mother of 4. My family is everything to me. My youngest son, Gentry, is 7 years old. He has recently become really sick. It started with some swelling in his face, ankles, and hands, so I took him to urgent care, and they thought it was just a seasonal allergy. A few days later, nothing had changed. Actually, it got worse, and his stomach swelled up as well, so we went to the hospital where they determined it was nephrotic syndrome, which is an issue with the kidneys that causes swelling and hypertension. They then sent us to Charlotte Levine's Children's Hospital. We were admitted from July 13th-18th. During this time, they ran a bunch of tests from urine, blood, ultrasounds, and then a biopsy. The results were horrible to hear as a parent. They diagnosed him with nephrotic syndrome and hypertension caused by a rare immunocompromised kidney disease called C3G dense deposit disease. His kidneys are not filtering his blood or protein back into his body; instead, it is getting stuck and coming out in his urine.Normal range for this is maximum 220 and his runs over 17,000.The worst part is that there isn't a cure. So all we can do is try to manage and maintain his health and kidney function with a lot of medicine and a very strict low sodium diet. Things have been very hard and painful for him. We have already had neurologist visits due to worsening issues and have been hospitalized 9 times since finding out in July and one of those stays were a month long. Poor guy has been on dialysis and is having to still do 5 infusions a week and has to take over 20 pills a day. He's also had to have 3 surgeries. They now say he is anemic and his calcium, potassium,and CO2 levels are is very low.It is extremely hard to see my once silly active baby boy completely different. He is just always so weak and tired. This all has put our whole family in a very hard situation emotionally and financially. We are currently in serious need of help. I would greatly appreciate any and all help that may be given to help my son and our family through these difficult times. He has his 8th birthday coming up on December 10th as well as the holidays. I just want to be able to help my baby in his health as well as emotionally. He deserves so much after the last few months he has had. Anyways, I would like to thank you in advance for any and all help or support given. Even the shares and reposts to help spread the word are greatly appreciated. No form of help is too small it is all important and adds up.

Thanks again,

Lynette Kightlinger

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