OK......I have a new role.....that of fundraiser.
So, this is the story. One of our choir members, Blanca had a new baby. I set up a Meal Train for her and when it was my turn, I took a meal round. The baby was divine! She let me hold him. Ahhhhh.....nothing like it. Then.............
SCID (Severe combined immunodeficiency) = No protection against infection
You have a newborn baby. If you are lucky, you live in a state that does newborn screening for this condition, but then what? I want to try and explain the effects….
Mom and newborn are isolated at home because ANY germs can infect and kill the baby. Mom’s milk must be tested to ensure there is no bacteria. Of course this means that the newborn gets used to a bottle so even nursing your baby is not possible.
Brothers and sisters cannot meet, touch, kiss, cuddle their new baby. Mom communicates with her other children via FaceTime. No visitors are allowed.
For a hoped for cure, the baby must receive a bone marrow transplant before he is 3.5 months old. Preferably from a sibling. Everyone gets tested in hospital - results take two weeks.
If there is a match, the baby has chemotherapy to get rid of any bad cells and then the transplant so that his tiny body can start building an immune system. This is done in isolation in hospital with Mom with him for around two months.
There are NO support groups for parents or siblings that I have found.
The cost is likely to be more than $500,000 - medical insurance will not cover that amount, so there will be a minimum of $200,000 to find. The cost of a house.
This is totally heartbreaking. So far, on the Go Fund Me page I have set up we have raised $8,000 which is amazing. I have also extended the Meal Train dates but this isn't as popular here as it was in California.
Blanca and I have been in constant contact. We have decided that a BIG raffle would be a good idea, but I need help with that. I have put out a call and she is looking too, so watch this space!
So, this is the story. One of our choir members, Blanca had a new baby. I set up a Meal Train for her and when it was my turn, I took a meal round. The baby was divine! She let me hold him. Ahhhhh.....nothing like it. Then.............
Just two days later she has a call from the doctor to say there was a problem with his newborn screening! Sebastian is diagnosed with SCID
You have a newborn baby. If you are lucky, you live in a state that does newborn screening for this condition, but then what? I want to try and explain the effects….
Mom and newborn are isolated at home because ANY germs can infect and kill the baby. Mom’s milk must be tested to ensure there is no bacteria. Of course this means that the newborn gets used to a bottle so even nursing your baby is not possible.
Brothers and sisters cannot meet, touch, kiss, cuddle their new baby. Mom communicates with her other children via FaceTime. No visitors are allowed.
For a hoped for cure, the baby must receive a bone marrow transplant before he is 3.5 months old. Preferably from a sibling. Everyone gets tested in hospital - results take two weeks.
If there is a match, the baby has chemotherapy to get rid of any bad cells and then the transplant so that his tiny body can start building an immune system. This is done in isolation in hospital with Mom with him for around two months.
There are NO support groups for parents or siblings that I have found.
The cost is likely to be more than $500,000 - medical insurance will not cover that amount, so there will be a minimum of $200,000 to find. The cost of a house.
This is totally heartbreaking. So far, on the Go Fund Me page I have set up we have raised $8,000 which is amazing. I have also extended the Meal Train dates but this isn't as popular here as it was in California.
Blanca and I have been in constant contact. We have decided that a BIG raffle would be a good idea, but I need help with that. I have put out a call and she is looking too, so watch this space!
