Donate for Hayden Kirchhof
Hayden made her way into this world on September 19, 2017, and it was the best day of our lives. Having previously gone through 2 miscarriages, we were ecstatic to become her parents.
Hayden grew at a rapid pace and despite her small size at birth, quickly shot off the charts when it came to height and weight. She was easy-going, a good eater, and an excellent sleeper.
Physically, tummy time and learning to crawl took her a bit longer than others her age. We attributed it to her size, and figured she would eventually catch up.
By 9 months, her growth started to slow. She was more active though, and had previously been so big that we thought she was just slowing down, and didn’t think anything of it.
At one year, we started the transition to whole milk, and that’s when we started to notice some big changes.
In the mornings Hayden would be ravenous for fluids. She would drink 12oz of milk followed by 20oz of water in minutes, screaming while we refilled cups. Sometimes we had to feed her in the shower because she would drink so much so quickly, her tummy couldn’t hold it, and she would vomit.
We took Hayden to our pediatrician on Friday, November 9th, worried about her extreme thirst. After several blood draws over the weekend and lots of doctors’ visits, we finally met with a kidney specialist. The pediatric nephrologist suspected cystinosis, and we had more blood drawn to test her cystine levels.
While we waited to hear back, we started treating Hayden for Fanconi syndrome, which had developed due to the damage to her kidneys. Hayden started taking supplements 5 times a day to help replace the nutrients that had been spilling into her urine and not being absorbed into her body.
On Wednesday, November 28, 2018 we received confirmation that Hayden does indeed have cystinosis. Only 500 people in the US and roughly 2,000 worldwide have it.
On the outside you would have no idea that Hayden has this condition. She is observant and quick to learn. She loves saying “Hi” to people who pass us by on our walks, and is sure to blow kisses to anyone leaving a room – even the nurses after they draw her blood. And she is always testing out new ways to make people laugh. She lights up the room wherever we are. Hayden makes life better for everyone around her.
We know that cystinosis is going to impact Hayden every day for the rest of her life, and for that reason we are asking for your help. We are extremely optimistic that during Hayden’s life, a cure will be possible thanks to organizations like the Cystinosis Research Foundation.
Please share Hayden’s story with others so that we can shine more light on this very rare disease and provide a solution for Hayden and every other family that has been impacted by cystinosis.
We are grateful for the community we have to support us, and want to continue to grow that community through awareness. Thank you for your support, both now and in the future.
Nick, Angela, Hayden, and her sweet dog Colter, who hasn’t caught a break since the day she started crawling