My niece Alisah, was a normal, perfectly healthy child. She has always been an honors student and involved in every sport or club at school possible. She was extremely active with school and on the right track. She even earned the Presidential Award from President Barack O'Bama in the 5th grade. She's had perfect attendance several years in a row. She just loved life and loved school. She lived a normal life until the age of 13.
At that time, she became very ill. She contracted viral meningitis. She was out of school fighting the meningitis for 7 months. She fought and fought to get better. Nothing was working. We were at the doctors' and hospital several times a week trying to find out what was wrong with her and trying to find the right medication to make her better. We soon learned that because she had "viral" meningitis, there was nothing that could help her. No medication would help. We just had to treat the symptoms of the meningitis to keep her from becoming more ill. It had to run its course just like any other virus. She fought this for 7 months. She lost over 40 pounds and was very sick for a very long time. We just thought this was from her having the meningitis and it taking a toll on her body.
After 7 months of her fighting to get better, her mom decided to take her for some more blood work. She was not looking like she would make it at this point. They left the hospital and within 15 minutes of being home, the Pediatrician called and said to get her back to the hospital immediately and if they couldn't, he would call an ambulance. Her parents didn't think twice. They got back in the car and rushed her to the hospital. Once she was there, they had a bed ready for her and she was immediately taken straight back into the Emergency Room with no wait. We knew something was really wrong with her, but still thought it was the meningitis.
The doctors and specialists did some more testing and found out that her blood sugar was so high it would not even read on the meter at the hospital. They had to do a special test to get an accurate level, it was through an artery draw. That test told us that her blood sugar was 818. A normal blood sugar range is between 80 and 130 for a child.
The hospital immediately made arrangements for her to be transported to another hopsital hours away that could provide the type of care she needed. The doctors' told her parents that she was a Type 1 diabetic, also known as Juvenile Diabetes. Her parents were scared to death they would loose their only daughter. They had no idea what Juvenile Diabetes was because it does not run on either side of the family. The hospital then, brought in a transfer team of Doctors and Nurses to keep her alive on the way to the next hospital.
Once they got there, Alisah was immediately taken into Pediatric Intensive Care, where she spent some time. They tried their best to get her blood sugar under control and nothing was working. After days, and countless tests, they were finally able to get her blood sugar to start slowly coming down. They had to bring it down slowly so her body would not go into shock.
We almost lost her on several occasions in Pediatric Intensive Care. Alisah has always been a fighter and we knew she would continue to fight this, even though she didn't fully understand what was going on, she never gave up. Each day, she fought harder and harder. She eventually started to get on the right track and her blood sugar was down to around 600. Her Pediatric Endocrinologist told her parents that her normal blood sugar should be between 80 and 130. They had a long way to go. At this point, Alisah lost her vision completely.
To this day, she still has not had ONE "normal" reading. Between all the changes that happen while a teenagers body develops, the insulin is being blocked by her hormones. Even though she is injecting the right amount of insulin, her body isn't absorbing it all. Her pancreas is completely shut down and will never work again, which has caused a lot of trips to her specialists. Her family is hoping one day for a pump or a pancreas transplant, however, since Alisah still has not been regulated, this will be years and years down the road. In the meantime, Alisah injects unbelievable amounts of two different types of insulin to keep her alive.
Due to medical necessity, her specialist has written countless letters of medical necessity to the insurance company, to try and get both of her insulins and supplies covered by their medical insurance. However, there are coverage limitations on the policy that prevent Alisah from receiving the amount of insulin and supplies she needs to have to live each day. The insurance company refused to provide the amount of insulins and supplies she needs daily. Type 1 diabetes is forever. This is something that will not go away, due to her pancreas being shut down, however, the family has hope that one day, Alisah's diabetes will be regulated so they do not have to carry this burden. However, we are over 10 months into diagnosis and Alisah still has not had ONE normal reading. This is where the cost of insulin and supplies come in.
She does not qualify for Medicaid or any other state/government insurance. Also, with the limitations on the policy her family has now, they tried to purchase a secondary policy to pick up the difference and found out it is against the law in the state of Indiana to purchase a supplemental policy for a minor. There are many hurdles to jump through daily.
This has become an extreme financial burden on her parents because the insurance company covers a minimal amount of insulin and supplies, due to coverage limitations, and the rest of the insulin and supplies come out of pocket by her parents.
At this point, with the astronomical cost insulin and supplies, and all the medical and doctor bills, that have occurred and are still occurring everyday, her family is struggling to purchase insulin, pay the doctors so they will continue to provide her care for their daughter or pay for a roof over their head, let alone the expenses of living. This has become an extremely difficult situation for her family. No one should have to choose between purchasing insulin and supplies to keep their daughter alive or paying the mortgage. The worry and burden of not know whether they will have enough to cover the mortgage and utilities plus the cost of insulin and doctor bills has taken an extreme toll on this family.
This family has always been the type of family to help others in need, whenever and however they could without question. Now, they are in a situation where they need the help and I am asking you to please consider helping by donating and paying it forward.
This family has helped everyone that has come to them in need, now I feel that we should all pull together and help pay it forward to help Alisah survive, by giving her the ability to live her life to the fullest without worry. She is a great kid and deserves only the best chance at a long lived fulfilling life.
Thank you for for your consideration. This family is in a crisis and really needs everyone's support to help make it through these difficult times to save their daughter.
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