Laila's Medical Fund
Donation protected
Laila is a special needs child. She is eight years old.
Laila has been rushed to the intensive care unit and placed on a ventilator from complications stemming from an infection. She was placed on steroids and heavy medications because her lungs were closing up. Currently she is improving but the family needs our help to cover her medical costs.
Your donation will also help the family save for a used van with a wheelchair ramp for Laila.
All donations go directly to Laila's medical fund.
More about Laila:
Updated photo 5/17/2015
Laila's great Grandmother adopted her five years ago and has been raising her as her own. She is only three feet, two inches tall, which is ten inches below average. She could be a bit taller if she was weight bearing which helps the bones to grow. She has hair that touches the floor when she is sitting. She is funny and smart and those of us that love her know it.
Laila had cancer at fifteen months, has a seizure disorder, delayed development, a trach, a gastric feeding tube, cannot yet walk, is just learning to talk, is oxygen dependent, and has had multiple hospital stays. Laila had a neuroblastoma at fifteen months and had one adrenal gland removed. Laila has had many doctors.
Nephrologists, neurologists, orthopedist, neuro muscular, pulmonologist, dietician, pediatrician, ear nose throat and gastric surgeon. She used to get aspiration pneumonia. Then she got a respiratory virus that put in hospital for five months in a drug induced coma with no one expecting her to survive, but she did. Now some of the specialists she only sees once a year for follow-ups. She used to get twelve to fifteen medications twice a day, now she only gets one seizure medication and the rest are dietary supplements.
For one five month stretch Laila was kept in a coma state from a respiratory virus, she has had heal cord surgery, and many other surgeries. The neurologists did not want resuscitate Laila when her breathing stopped from seizures. They wanted to put her on the DNR list. Laila has a neuro muscular Dr. and an orthopedist. So back in February, she had heal cord lengthening but they are still too tight, so she was given botox into the calves which relax the muscle. Then serial casting, which are light weight.
Laila is also on ketogenic diet which is the only thing that got rid of the seizures, that were about fifteen times a day and she would stop breathing and they would have to use the ambu bag to get her breathing again. She has been seizure free for four years and now only gets one seizure medication at a small dosage. Being put on a special diet allowed two of her medications to be completely eliminated. One of them valium which causes amnesia. And once it was known that a particular nebulizer treatment was giving her infections in her trach, (a steroid) it was stopped she has not needed any nebulizers in almost two years!
Laila is happy and has lived beyond what they said. She is cancer free and no longer sees an oncologist. She may never be what is considered 'perfect' but she is perfectly who she is and one day will be totally whole. And Laila does not care about things (except for her favorite blanket). They used to spend money on toys but she has no interest in them. She is happiest when her family comes around. Love is what she wants, not things.
Laila is growing a lot. They can hardly carry her anymore. Ever since they increased her protein and ever since she started growing faster she has put weight on. She is now officially off of all anti seizure medications! She is still having a few withdrawal symptoms but the hope is they will be gone soon too.
After four wonderful years of Laila being seizure free they have returned. She has had three in one week. We spent four days at the children's hospital. She went through a 48hr eeg. She had no seizures while there but had three 'events' when we arrived home. I called neurology and talked with the nurse. After much discussion her medication dose was raised and her bed elevated and it seemed to clear up the seizures. She finally got back to herself after weeks of misery.
Laila has been rushed to the intensive care unit and placed on a ventilator from complications stemming from an infection. She was placed on steroids and heavy medications because her lungs were closing up. Currently she is improving but the family needs our help to cover her medical costs.
Your donation will also help the family save for a used van with a wheelchair ramp for Laila.
All donations go directly to Laila's medical fund.
More about Laila:
Updated photo 5/17/2015
Laila's great Grandmother adopted her five years ago and has been raising her as her own. She is only three feet, two inches tall, which is ten inches below average. She could be a bit taller if she was weight bearing which helps the bones to grow. She has hair that touches the floor when she is sitting. She is funny and smart and those of us that love her know it.
Laila had cancer at fifteen months, has a seizure disorder, delayed development, a trach, a gastric feeding tube, cannot yet walk, is just learning to talk, is oxygen dependent, and has had multiple hospital stays. Laila had a neuroblastoma at fifteen months and had one adrenal gland removed. Laila has had many doctors.
Nephrologists, neurologists, orthopedist, neuro muscular, pulmonologist, dietician, pediatrician, ear nose throat and gastric surgeon. She used to get aspiration pneumonia. Then she got a respiratory virus that put in hospital for five months in a drug induced coma with no one expecting her to survive, but she did. Now some of the specialists she only sees once a year for follow-ups. She used to get twelve to fifteen medications twice a day, now she only gets one seizure medication and the rest are dietary supplements.
For one five month stretch Laila was kept in a coma state from a respiratory virus, she has had heal cord surgery, and many other surgeries. The neurologists did not want resuscitate Laila when her breathing stopped from seizures. They wanted to put her on the DNR list. Laila has a neuro muscular Dr. and an orthopedist. So back in February, she had heal cord lengthening but they are still too tight, so she was given botox into the calves which relax the muscle. Then serial casting, which are light weight.
Laila is also on ketogenic diet which is the only thing that got rid of the seizures, that were about fifteen times a day and she would stop breathing and they would have to use the ambu bag to get her breathing again. She has been seizure free for four years and now only gets one seizure medication at a small dosage. Being put on a special diet allowed two of her medications to be completely eliminated. One of them valium which causes amnesia. And once it was known that a particular nebulizer treatment was giving her infections in her trach, (a steroid) it was stopped she has not needed any nebulizers in almost two years!
Laila is happy and has lived beyond what they said. She is cancer free and no longer sees an oncologist. She may never be what is considered 'perfect' but she is perfectly who she is and one day will be totally whole. And Laila does not care about things (except for her favorite blanket). They used to spend money on toys but she has no interest in them. She is happiest when her family comes around. Love is what she wants, not things.
Laila is growing a lot. They can hardly carry her anymore. Ever since they increased her protein and ever since she started growing faster she has put weight on. She is now officially off of all anti seizure medications! She is still having a few withdrawal symptoms but the hope is they will be gone soon too.
After four wonderful years of Laila being seizure free they have returned. She has had three in one week. We spent four days at the children's hospital. She went through a 48hr eeg. She had no seizures while there but had three 'events' when we arrived home. I called neurology and talked with the nurse. After much discussion her medication dose was raised and her bed elevated and it seemed to clear up the seizures. She finally got back to herself after weeks of misery.
Organizer
Georgie Ulberg
Organizer
Thompsonville, MI
