Marley grew her wings July 26, 2021
Marley’s favorite color is pink and purple, she loves playing with her brother Arlo, jumping on the trampoline, dancing, singing, cooking, dressing up, shopping and loves animals.
Her personality is her best quality, it’s the one thing that has kept us all grounded. She is a fighter, she will tell you when your wrong and is Strong willed. She laughs at everything is so cheeky and will talk underwater. She doesn’t stop talking! Her face lights up and just makes everyone’s day.
How old was your child when they were diagnosed with SIOD? Marley was 4 when we found out.
What were your thoughts when you FIRST learned that your child was diagnosed with SIOD? We searched and scoured the Internet on all information we could gather. Our first thoughts were what we’re we in for. What was her life going to be. The lack of information from our doctors were evident that it was so rare they just didn’t know.
Tell us briefly about the medical complications that have occurred because of SIOD: Marley was low tcells, kidney failure, high blood pressure, short stature, fluid around her heart, low muscle tone, feeding nutrition and weight gain.
What has your child's treatment plan looked like? Marley has kidney dialysis 3 days a week. We are planning on doing an ABOi kidney transplant in the next 3/4 months.
What challenges does your family face because of SIOD? I think the ability to plan the future, life changed daily so we’ve had to adapt to the ever changing landscape that has become our life.