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For those of you who may not know our story, our two beautiful sons, Salvatore and Giovanni, have been living with Metachromatic Leukodystrophy Disease (MLD) for the past 10 years.
MLD is a rare hereditary disease characterized by accumulation of fats called sulfatides. This causes the destruction of the protective fatty layer (myelin sheath) surrounding the nerves in both the central nervous system and the peripheral nervous system.
We have had many hospital stays and procedures which have put a strain on us financially. Although our spirits stay strong, it has not been an easy journey for our sons or our family.
Salvatore will be having Spinal Fusion surgery on February 27 to correct his scoliosis.
His surgeon said that he will fuse his spine and insert two rods to stabilize his back. This procedure can take anywhere from 8 to 12 hours. Once he wakes up in recovery he will go to the Pediatric Intensive Care Unit (PICU) for a few days and then step down to a regular room.
We believe his hospital stay should be for five days, however this will all depend on Salvatore‘s pain tolerance. The surgery will have him under anesthesia for many hours and that can take a toll on anyone, especially a Leukodystrophy patient.
In the past, many of you have asked, “How can we help you guys?” We decided it was best to set up a Go Fund Me account. This fund will be used for Salvatore’s needs and anything associated with his surgery. This will include medical expenses, any new medical equipment that he may need, gas, parking and anything to make Salvatore’s recovery as comfortable as possible. We tossed this idea back and forth for a while. We don’t want anyone to feel like they have to give. We would like to ask you to pray for both of my sons.
Mel and I will have a lot on our plates to care for Salvatore and of course, Giovanni too. We will need to make sure Giovanni understands all of this especially while Salvatore is inpatient.
He does ask questions and we try our best to answer them and be honest with him. Giovanni said this to me, “If we fix his spine, will that fix Salvatore all together?” Some days I am left speechless.
We ask you to pray for Salvatore, and for all of us. There will be a lot of juggling between Mel and myself but we will conquer.
Thank you,
Lina, Mel, Salvatore and Giovanni
MLD is a rare hereditary disease characterized by accumulation of fats called sulfatides. This causes the destruction of the protective fatty layer (myelin sheath) surrounding the nerves in both the central nervous system and the peripheral nervous system.
We have had many hospital stays and procedures which have put a strain on us financially. Although our spirits stay strong, it has not been an easy journey for our sons or our family.
Salvatore will be having Spinal Fusion surgery on February 27 to correct his scoliosis.
His surgeon said that he will fuse his spine and insert two rods to stabilize his back. This procedure can take anywhere from 8 to 12 hours. Once he wakes up in recovery he will go to the Pediatric Intensive Care Unit (PICU) for a few days and then step down to a regular room.
We believe his hospital stay should be for five days, however this will all depend on Salvatore‘s pain tolerance. The surgery will have him under anesthesia for many hours and that can take a toll on anyone, especially a Leukodystrophy patient.
In the past, many of you have asked, “How can we help you guys?” We decided it was best to set up a Go Fund Me account. This fund will be used for Salvatore’s needs and anything associated with his surgery. This will include medical expenses, any new medical equipment that he may need, gas, parking and anything to make Salvatore’s recovery as comfortable as possible. We tossed this idea back and forth for a while. We don’t want anyone to feel like they have to give. We would like to ask you to pray for both of my sons.
Mel and I will have a lot on our plates to care for Salvatore and of course, Giovanni too. We will need to make sure Giovanni understands all of this especially while Salvatore is inpatient.
He does ask questions and we try our best to answer them and be honest with him. Giovanni said this to me, “If we fix his spine, will that fix Salvatore all together?” Some days I am left speechless.
We ask you to pray for Salvatore, and for all of us. There will be a lot of juggling between Mel and myself but we will conquer.
Thank you,
Lina, Mel, Salvatore and Giovanni
Organizer
Lina Graziano Sereno
Organizer
West Caldwell, NJ