Matt and Mariah welcomed their first child into this world, 8 weeks early, on December 28, 2023. Born at 3lbs 13oz and 15” long, tiny Scarlett hadn’t wanted to wait any longer to be in the arms of her parents. Right away the doctor noticed some abnormalities and ordered testing (during the pregnancy there were signs of something abnormal due to her very small size on ultrasounds; but all testing conducted during pregnancy came back normal). Once the test results were back, at a mere 2 weeks old, this precious little girl was given a very grim diagnosis; KID Syndrome (Keratitis Ichthyosis Deafness Syndrome), and of that, the rarest most lethal variant “A88V”. She is only case #18 of that variant ever recorded in medical history, and only case #100 of KID syndrome worldwide. This particular variant has a 3-4 month prognosis, although a child or two did live longer than that (up to 1yr old). Another interesting fact is that this is a genetic condition, yet one that Matt nor Mariah have in their genetic backgrounds; making this a spontaneous genetic abnormality.

This diagnosis is shocking and unfathomable, yet the Hoover Family is handling it with such grace and positivity. It’s truly inspiring. With the early diagnosis, the doctors are able to stay ahead of problematic issues and hopefully extend her life past the prognosis.

Little Scarlett spent the first 2 months of her life in the Riley Children’s Hospital NICU before being released home February 18th on Hospice care. Her Mother, Mariah, has had to stop working so she can do around-the-clock care for Scarlett, which includes 2hrs of skin care and feeding, with a 1 hour break before doing the next 2hrs of skin care and feeding. Scarlett struggles with her suck-swallow reflex, so she has an NG Tube that she gets fed by if she is unable to take a bottle by mouth, and this way of feeding takes a great deal of time, which the IHR Team got to witness during their visit at the family’s home. With her NG Tube being a semi-permanent fixture that is easily removable by pulling on it, they have to keep Scarlett swaddled so her hands don’t pull the tube out…so she is swaddled anytime she isn’t receiving her skin care routine. Their hope is to get Scarlett a different type of NG Tube at an upcoming appointment so that they can “free” her from the swaddle and let her have free movement like any other baby. Just like any parent, they want their daughter to enjoy all the typical baby things!

Research is relatively minimal on this disease and even more minimal on her variant. The Hoover family is wanting to raise awareness of this condition with hopes that more research can be conducted and doctors can find better ways to treat this (to extend life).

From our own research we have found that there is a defect within 1 chromosome that causes this condition, and scientists are in the works of “fixing” other chromosomal defects by way of gene therapy. Maybe with extensive research on this particular condition they could find a way to apply gene therapy to babies diagnosed with this…even while in the womb. With science, so much is possible! (This is not currently in the works for KID syndrome, but simply being brought up as something that research could possibly lead to).

To conduct research, it costs money. A lot of it. So raising awareness of this syndrome can help garner the attention it needs to the right people so that funds can be applied to KID syndrome scientific research, more specifically the variant Scarlett has.

A large part of IndyHoodRats is giving back to the community. We have a passion for our community and donating to charity. For this particular customer of ours, we have purchased 200 bracelets (“Miss Scarlett Support Team” bracelets, pictured below) from the family that we will hand out at our April 27th Block Party event. These bracelets are to help keep Scarlett on people’s minds and raise awareness of her condition. We were already able to raise and donate $2,000 for the family through private donations, but we would like to do even more!

Right now, we are wanting to raise as much money as possible to help the Hoover family out during this difficult time. Money to help them cover life’s bills, medical expenses, loss of work, groceries, outings, or anything else they deem the money should go to. Anything we can do to help them!

To read more about Scarlett’s rare variant (graphic pictures included on link): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6372339/

To read about gene therapy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2907101/