Aunesti’s Fight To Be Cured Of Sickle Cell Disease!
This campaign is for my sister, Helen Scott’s 11-year-old daughter and my niece, Aunesti Sullivan. Aunesti was born with sickle cell anemia, the most severe form of sickle cell disease (SCD). SCD is an inherited blood disorder that causes frequent severe pain crises which require hospitalization. SCD is the most common inherited blood disorder affecting about 100,000 Americans. It can affect anyone, regardless of race or color.
A person with SCD is likely to develop major health conditions such as acute and chronic pain, severe anemia, infections due to weakening or damaged spleen, joint complications, acute chest syndrome, stroke, eye problems, heart disease, pulmonary, kidney, and liver problems.
As a result of SCD, Aunesti has developed Avascular Necrosis (AVN) which has caused her to develop brittle bone disease due to low oxygen in the blood, one of the traits of SCD.
My sister has taken Aunesti to the emergency room many times over the years due to severe pain crises. She is admitted to the hospital 4 to 5 times a year. Her hospital stays have been as long as 7 weeks at a time.
Aunesti is restricted from all impact sports as they cause the most severe pain crises and can cause bone fractures due to her brittle bone condition. Doing activities that most kids and adults see as being normal and fun like running, jumping, tumbling, or wrestling can cause a pain crisis that can lead to hospitalization.
As if life with SCD is not already challenging enough for my niece and her mom, during the 2016 school season Aunesti was confronted with school bullying and assault from some of her classmates. On one occasion when she was physically assaulted, it caused a severe pain crisis, which resulted in a 6-week hospital stay. She was out of school for three (3) months from October 2016 thru January of 2017.
Despite having survived so many days with pain and being admitted to the hospital many times during her 11-years of life, Aunesti knows that she is capable of manifesting anything that she wants in life, including being cured of SCD. She believes that God will answer her prayer for a cure.
Bone marrow transplants have been successful in curing some patients of SCD and Aunesti meets the requirements. The process involves administering chemotherapeutic and other drugs, to prepare her body for the transplant.
There are three (3) stages before the bone marrow transplant: Stage 1 is the at-home pre-medication. Stage 2 is the in-hospital prep-medication. Stage 3 is the chemotherapy treatment. Aunesti is currently at Stage 1. Stages 2-3 will begin in May of 2017. The transplant will take place on June 1, 2017. After the transplant, she will remain in the hospital for 2 months or longer.
When Aunesti returns home to complete her recovery, she will be confined to her home for the first 12 months and can only leave to travel to and from the specialty children’s hospital for scheduled follow-up care. Follow-up care exams will be as often as 2 times a week during the first 12 months.
Aunesti will have to be kept in an environment that is free of any form of viruses, bacteria, fungus, spores, and other contaminants. After the transplant, it will take two (2) years before her immune system fully rebuilds itself. Aunesti will require at-home around-the-clock care.
Aunesti’s meals will have to be prepared in small batches, cooked to a certain temperature, and she must consume them immediately after preparation. She will not be allowed to eat leftovers or even store uneaten meals in the refrigerator because of the risk of development of bacteria. Aunesti will not even be allowed to handle fresh fruit and vegetables because of the risk of coming into contact with a fungus that can be present on them. She can only drink filtered water from a freshly opened container or water that is freshly dispensed from a filtration system.
My sister is a single parent and will not be able to work during the first year of Aunesti’s recovery period so that she can provide her with the necessary care.
We are asking you to help if you can. Although the bone marrow transplant is covered by insurance, all other related costs are not. What we know is that between all the travel related costs, repairing and maintaining the car, paying rent, utilities, getting the necessary caretakers, and purchasing other necessary things to aid in Aunesti’s recovery will take a lot of financial resources.
Please help. We thank you for any donation small or large. Gifts are tax deductible.
We thank you in advance for your help and prayers.