The Caligiuri family, their struggle and how you can help.
At Rev Publishing’s annual Christmas party this past November, a silent and live auction fundraiser was held to help out a local family dealing with a rare genetic disorder. Their eight-year-old son Matthew is currently living with this disorder, and their son Riley passed away four years ago. The disorder, which is the 5th mutation of the PRPS-1-Gene, affects male babies and is carried through the mother, is exceedingly rare. Riley and Matthew are the only known children with the 5th mutation of this gene.
To put it in layman’s terms, the boys mother, Leianne Caligiuri, explains exactly what having this disorder means:
“It is a neurological disorder where the signals from the brain aren’t sent to the rest of the body. Matthew has no trunk control, so he can’t sit up, walk or talk. He is legally blind, but does see very bright light. He is hearing impaired, but is on a trial drug to slow down the progression of hearing loss. He has Diabetes Insipidus, which is a very serious problem with his sodium. He has seizures and he also has control central sleep apnea, where his brain forgets to send the signal for his body to breathe.”
I really want to thank Dan and Fran from the bottom of our hearts for being so kind and generous for including a fundraiser at their company Christmas party to assist us in retrofitting our home to make caring for Matthew easier. They are very emotional people, and we really appreciate everything they have done. Thank you to Alex at Rev for organizing the night and for all of her hard work in making it a success. A big thank you as well to everyone for donating prizes or making a monetary donation. You have all helped to make our lives easier in caring for our beautiful son Matthew. Thank you!
Leianne, Ralph, Adam and Matthew Caligiuri
Needless to say, this is not an easy condition for a family to deal. Leianne notes that despite all these issues, Matthew is still a happy kid. “He loves going to school everyday, to listen to his friends sing and play. The other kids read to him and love to push him around in his wheelchair.” Matthew absolutely loves listening to music, and has an IPOD on the go at all times. He loves hearing his dad sing and his mom talk, and loves getting cuddles from his brother Adam and the whole family.
The older Matthew gets though, the more difficult it becomes to care for him. Certain modifications need to be made to the house to ensure that the family can continue to care for Matthew at home. The fundraiser Rev had was done to raise money for the retrofit of the Caligiuri’s home. As Matthew has gotten older, he is getting heavier to lift, so ceiling tracks are needed in some areas of the home to make it easier to move Matthew around. An accessible bathroom is also needed on the main level of the home as well as lifts in the garage and throughout the home, which will assist in getting Matthew in and out of the house. Leianne relates that Matthew requires 24-hour care, and has a nurse overnight as well as other workers to assist throughout the week.
The fundraiser put on by Rev will allow the Caligiuri family to begin renovations on their home in the near future, which will help to improve quality of life for not just Matthew, but the entire family.
If you wish to help the family please email firstname.lastname@example.org for details on how.