Each month we donate a portion of our profits to a child with medical needs through the Legendairy Littles program. At a 13-week ultrasound, a cyst was discovered and it was almost misdiagnosed as a fatal genetic syndrome. Many ultrasounds were done to monitor the cyst and growth of baby Abraham. A fetal MRI was done and at 26 weeks, a specialist was able to recognize CLOVES.
Due to severe Preeclampsia, Abraham was born 9 weeks early. There are only 300 documented cases of CLOVES worldwide. This syndrome can cause vascular, lymphatic cysts to grow on both sides of the chest and belly. In Abraham’s case, it also impacted his and one leg is three times the size of his other leg.
Unfortunately, there is no cure for CLOVES and only a few treatment options. He spent 59 days in the NICU before being discharged the first time. After only 11 days he was admitted again.
In January Abraham will turn seven months old. Abraham has been hospitalized six times in his first five months of life. Chemo is used to help with his CLOVES syndrome, but it is a struggle to maintain a dose that does not cause a toxic level in his blood. Since he is immunocompromised, even a small cold that he caught in November led to pneumonia that required a hospital stay.
He is anticipating at least one more major surgery before his first birthday. In addition to that, he will be meeting with an orthopedic doctor to discuss his walking abilities and any potential surgeries to help him gain that independence.
Despite all challenges that Abraham goes through, he is full of joy. He enjoys coo-ing at nurses during his weekly blood draws, trying to roll over, and being with his family.
The family often has to pay for appointments, therapies, and medications upfront and then fight with insurance for the chance at reimbursement. During the month of January, a portion of all sales will be donated to Abraham’s family to help with his continued care. Abe’s mom has started documenting their journey with a blog. If you would like to follow, you may do so here: https://entrustedmotherhood.blogspot.com/?m=1
GoFundMe link: https://www.gofundme.com/f/