Hello my name is Lydia, I am 13 years old and the last 8 years have been really difficult but on September 1^st 2018 I had a lifesaving Kidney transplant.

 

Once quoted as ***A Young Transplant Patient with Dreams of Tea With the Queen.

Lydia Check never stopped dreaming. She just slowed down. And since her kidney transplant she has a long wish list that once included tea with the Queen of England.

She once described herself as she  “looks like a regular kid on the outside but really sick on the inside”.

At the age of 4 Lydia was tired. She was losing weight. She had blood seeping from her bowels. At first she was treated for ulcerative colitis, bleeding ulcers in her stomach and colon. With treatment from her GI Dr. Abu-Salih he continued monthly blood screenings to monitor her and in August of 2015 the screenings showed something wasn’t quite right with her kidney function. Dr. Abu-Salih made a few phone calls and Lydia was admitted to Riley Hospital for Children under the care of pediatric nephrologist Dr. Corinna Nailescu.

A biopsy was performed and the next three days she spent (Labor Day Weekend) flat on her back to prevent internal bleeding. Lydia was administered steroids to boost funtion of her kidneys, but there was no improvement – sadly, only the side effects from the steroids which  included weight gain, puffiness in her face, and emotional highs and lows. By August of 2018, routine blood work showed more decline in her kidney function. Genetic testing results determined the Lydia’s kidney disease was Nephronophthisis, an inherited autosomal recessive disorder, rare but one of the most common genetic causes of childhood kidney disease.

Treatments and medications only delayed her Kidney disease but in 2018 her kidney function took a decline to kidney failure. Lydia began dialysis three days a week for four hours a day – all the while knowing she would one day need a new kidney.

“She was wearing down quick over the summer leading up to her kidney failure. Then we had to face dialysis which was affected the whole family not just her,” said her mother Paula Check. Lydia is the only child of Paula and her husband David, of Fishers. “We definitely went through this together, the rollercoaster of feelings, emotions and exhaustion,” said her mom.

Along with the emotional strain came the financial challenges. So the family decided to partner with the Children’s Organ Transplant Association (COTA). The organization helps children and young adults who need life-saving transplants by providing fundraising assistance and family support. According to COTA’s website it is the nation’s only fundraising organization solely dedicated to raising dollars to assist children and young adults in need. Among the fundraisers to assist Lydia were swimming outings, outdoor movie nights, fashion shows, silent auctions, and a Superhero 5k run.

On September 1, 2018, Lydia received a kidney transplant. At a recent check up Lydia wearing a gray t-shirt with a pink Superhero “S” on the front and a smile on her face. It was a look that is most typical of this little girl’s personality said her mom.

“Prior to her transplant surgery she was sick every day, vomiting, diarrhea, tired. She started to seem like she was losing her self-confidence a bit. But now this life-saving transplant surgery has given her new life,” said Paula Check. Since surgery, two teachers have come to the house to help Lydia keep up with schoolwork. At the advice of doctors, her parents have opted to protect her from extra germs during recovery by choosing the homeschool option.

“She gets bored at home but I love seeing her face everyday when I get home from work. She is the light of my life. She has touched so many lives. It’s like she has a magic inside her that we can’t explain,” said Paula Check. “She has something that is going to take her far and I can’t wait to see where she goes. She has a heart bigger than the ocean and no matter how she is feeling or what she is going through she always takes a moment to ask others how their day was or how they are doing.”

We are forever grateful to the donor family for making the decision to donate life to Lydia. It was such a selfless beautiful gift. 

On December 10, Lyida turned 13 with a new lease on life, she has a bucket list waiting to be explored. That list includes: A Disney Cruise, seeing the Eiffel Tower in Paris, meeting Taylor Swift..

In the meantime she enjoyed singing, dancing, being a Super Hero, a cheerleader and enjoying visits with Disney princesses (especially Sleeping Beauty).  Now she is even taking electric guitar lessons and singing with a band.

In 2020 with a weak and compromised immune system there was a threat of the Corona Virus so activities were limited. In July Lydia contracted a parasite and was very sick. Medications treated it within a timely manner but the infection woke up her Ulcerrative Colitis for the first time in 6 years and she began having terrible stomach pain and frequent bowel movements that were full of blood. Steroids and meds were prescribed and she is waiting for her UC to go back into remission. Again in October Lydia was sick. With headaches, vomiting, diahrea, bloody stools, loss of appetite and sleeping more than usuall. She was admitted to Riley Children’s Hospital. Still with concerns of the Corona Virus the hospital, doctors, nurses and parents were unsure of what was going on. After several days in the hospital and her numbers improving she was released with the same symptoms she entered in with and having faith in improveing her condition. Days later they had a call from the Board of Health stating that Lydia had salmonella. In transplant patients it doesn’t just go away, it attaches. She was given a 10 week steroid plan and antibiotics. Her appetite increased, her symptoms slowed and she began to heal for the first time in a very long time. 

Lydia continues on each day with that same smile on her face. Each day, week, month year. It is all the same, what will today bring? Lydia puts on her brave face and moves forward. Gone are the days where Lydia is connected by her Gtube in her stomach to a pump for 9 hours a day for hydration. She will never know what it is like to live like a normal healthy kid playing without worry or concern but this is her normal. 

“She has handled the stress of this better than most adults I know,” said her mother. “She is strong and brave; she is a soldier. Lydia says it is because she has love, hope and faith.”

SInce Lydia’s kidney transplant she has continued to do many great things. She has been a motivational speaker, an advocate for childhood illness, become a published author, singing and playing the electric guitar seem to be her new favorite pastimes. She was even asked to be a part of the ground breaking for IU Health’s Saxony location. They are expanding to be able to care for and treat children. She has been asked to speak on behalf of Make A Wish to local businesses to let them know how important it is to make donations to their organization. During Covid she was a cohost for an online Make A Wish Telethon. She has also become fast friends with the President of Riley Childrens Hospital President Gil Peri. The last time she was at Riley Hospital for her check up, He came to check on her personally.

Parents Paula and David are working hard to provide Lydia with the best care they can but sometimes they need help. Medical needs are exceedingly expensive with the transplant surgery, antirejection medications, doctor visits/check-ups and the hospital stay (not to mention the time they have to take off work to be there for Lydia and to get her to appointments).

The family decided to partner with the Children’s Organ Transplant Association (COTA). COTA helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.

Click on link below to visit Lydia’s facebook page created by her family!

https://www.facebook.com/LydiasCrusade123/