Eli ☀️'s Story

Eli was a medical mystery until he received his ZTTK Syndrome diagnosis in July 2023. He has always been such a happy boy but has suffered through a lot of testing and medical treatment since birth to aid his many medical conditions associated with ZTTK Syndrome.

Eli has short stature, developmental delay, hearing loss in one ear, a multi-cystic dysplastic kidney, born with talipes (club foot), has had bilateral hernia repairs and a few other health conditions. Eli’s list of symptoms is constantly changing as we learn more about ZTTK Syndrome.
At four years old, Eli is classified as pre-verbal and requires assistance with his mobility and everyday tasks. He engages in speech, physio and occupational therapy fortnightly and amazes us everyday with his determination and resilience to try and close the gap between his biological and developmental age.

Our little Eli brings such joy to everyone around him and loves the little things in life. He is constantly laughing at cars driving by, splashing in water, throwing balls, watching his dogs wrestle and the word ‘yuck’.

We are so grateful to have him in our lives everyday, but not knowing what his future may hold is a constant strain. We hope that by contributing to the ZTTK SON-shine Foundation’s researching efforts, that they are able to come up with successful therapeutics for the SON-shines, while raising awareness and advocating for patients and families.