Our Isla girl was diagnosed with Cystinosis in February 2022. Leading up to the diagnosis was a long waiting season with several rounds of labs, x-rays, ultrasounds, specialists’ visits–one of the most difficult times in our lives. Isla was a champ with each blood draw and tests she had to have. After genetic testing came back confirming cystinosis, we did a deep dive into learning about this rare disease.  It was overwhelming to say the least. We were quickly put into contact with families with cystinosis who were so helpful, understanding, knowledgeable, and provided comfort. Two weeks later, Isla had a G-tube placed and we were learning all the tips and tricks of all her medications. We made changes to adjust to our new normal. 

Isla continues to show us how resilient she is and full of sass. She loves dance class, swimming, painting, and started school this year! We have been able to attend the CRF Day of Hope Conference for the past 2 years and have been inspired to start a fundraising event, CRF Pickledome OKC. We look forward to giving back to this community that has been so supportive, and we are hopeful for the future. 
Ashley and Duncan McAllister