Unfortunately, this year Xavier and Lylah received the shock of their lives. Their father abruptly passed away (heroin- but they both don’t know that) in May of this year. He left us with $13,000 in child support arrears and gathering to peice back together normalcy. It came on the heels of delivering a child with special needs. Rhombencephalosynapsis. So rare there are only about 200 cases documented worldwide. Her cerebellum is fused. It’s your “small brain”, basically the hub of collecting information and figuring out how to control your body accordingly. Scarlette is almost 9months old and still cannot sit up. She has Physical Therapy and Occupational Therapy on a weekly basis. All the while Xavier and Lylah go to grief counseling weekly. I am trying my best to ensure these children put out into the world never become “just another statistic “.
Please, if you have it in your heart, help the struggling family picking up the pieces before the holidays. Scarlette has been a bit of a financial drain. She does not get disability as ssi simply denied it because of the rarity. I just want to give the children a wish this holiday so they have something to look forward to rather than basking in the pain of a very important loved one missing and the resentment of the baby that absorbs so much time they will find also takes up quite a bit of resources too.
John wasn’t buried. He was creamated and his ashes remain with his second wife of six weeks. While it was mentioned to his mother that I would appreciate some of his remains to place in an urn tree and to plant it, that fell upon deaf ears.
Xae and Lylah need somewhere to remember their father and be alone with their thoughts. Xavier really would like to donate a bench in his honor. He has reached out to our local park. He wants to help improve the community as well. He brought it up as a Christmas wish to a family already struggling. Any help would be immensely appreciated!
The life of the dead is placed in the memory of the living - Marcus Tillius Cicero
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