Sydney is a sweet, quiet, loving 11-year-old girl. She was diagnosed with end-stage renal disease (kidney failure) at the start of last year in February 2022.

On 1/17/22 Sydney had a tooth extraction that would not clot properly. The dentist’s office had her in multiple times but could not stop the bleeding. She began vomiting a lot and we were concerned that she may have had an infection at the extraction site. We reached out for a second opinion with another dentist and he was able to fix the clotting. The bleeding stopped, but Sydney continued to vomit and became very pale, so we took her into the ER on 1/31/22. On 2/1/22 we found out she was extremely anemic and was experiencing kidney failure. This was so shocking to us and it did not feel real.

Sydney received multiple blood transfusions and started on hemodialysis in February 2022. Hemodialysis is a process where a catheter is surgically attached to a central vein in the chest, which is then connected to a special machine that slowly removes and cleans out the blood before returning it back into the body. The machine does what kidneys typically do and gives them a break. The process was about 5 hours, taking place in the middle of the day at the hospital three times a week. It was disruptive for Sydney, affecting school and activities. It was an intense process that left her with headaches, extremely weak, tired, and dizzy afterwards. She went through hemodialysis for about a month, then had a procedure to have a new catheter installed in her stomach with an exit transfer site in order to transition to daily peritoneal dialysis (PD). This procedure took two weeks to heal. Peritoneal dialysis uses the peritoneum in the abdomen and dialysate fluid to clean out extra fluid and waste in the blood. Peritoneal dialysis is done at home in her sleep for 10-12 hours. The set up for dialysis is a big routine with a lot of supplies needed. In the evening we set up all of the supplies and the PD machine. We must be clean and sterile when connecting all the supplies to the machine and to Sydney.

Dialysis is keeping her stable, however it is a short-term band-aid and not a solution.

With the exit transfer site for dialysis in her stomach she is not able to go swimming due to the high chance of infection. It makes her sad because swimming is one of her favorite things to do. Being anemic affects her energy levels, so she is often tired and always cold.

Sydney was very traumatized by needles from the constant pokes over the last year in the hospital and she is going through counseling for help. She has lab draws and injections weekly that are tough for her to endure, however with the help of counseling we hope she learns coping skills. It has been very tough watching her go through all of this. No one in our family has been in her shoes and we try our best to keep encouraging her, keeping things as normal as possible and having fun. Despite all of the hardships she has gone through, she remains brave and strong. She is one tough cookie!

This last year has been difficult and exhausting for our family physically, emotionally and psychologically. We went from a fairly normal life to having our whole world flipped upside down. Aside from being mom and dad we now needed to fill the role as doctor, nurse and therapist. Sydney was in and out of the hospital many times, so we tried to make the hospital visits fun for her. She became friends with the wonderful doctors and staff there who would often surprise her with little prizes. Big brother Ethan helped at home with the dog while we took turns with hospital rotations. He has been very supportive of his sister.

We are so grateful that Sydney is still able to go to school and keep her routine somewhat normal. She enjoys being in school and hanging out with her friends. She loves anything purple, mermaids, unicorns & fairies. She is kind, sweet, loves to laugh, watch comedies and game shows. Her hobbies include riding her bike, swimming and drawing. She loves games like Uno and can get very competitive!

We are working on nutrition and using other natural solutions to help keep her healthy. The next step is a kidney transplant. There isn’t a transplant facility in Idaho so we will be traveling out of state for the transplant. We pray that God will heal her, however we realize a transplant is what is needed for her to have the best quality of life. I, (Susan) found out in April that I am a viable donor! I am so grateful and this is an amzing gift to her!

We are partnering with the Children’s Organ Transplant Association (COTA) to help raise funds to assist with transplant-related expenses. COTA’s support will be available for a lifetime should Sydney need another transplant later on. Donations are tax deductible to the fullest extent of the law, and COTA does not take fees from funds raised. 100% of the donations raised will assist with a lifetime of transplant-related expenses. Our medical insurance covers the transplant surgery, but there are many expenses not covered such as lodging, flights, insurance premiums, living donor costs and much more.

If you are not able to donate monetarily to COTA for Sydneys Journey, we ask for prayers and support to cheer us on as we venture into this next chapter in Sydney’s journey. We have received so much love and support from our parents, family, and friends and we feel extremely blessed. 

Thank you for reading Sydney’s story and being part of her journey! We will provide updates on this page if you’d like to check in periodically.

“I can do all things through Christ who strengthens me”.  Philippians 4:13

Love,
Ben, Susan, Ethan & Sydney