Help Princess Zion beat Sickle Cell Disease
Donation protected
Zion is 3.5 years old and was diagnosed with Sickle Cell Disease when she was only 10 days old. She has type SS, the most severe kind.
People with this disease somtimes don't live beyond their 20's with an average life expectancy of 40 years. Sickle Cell Disease can harm a persons spleen, brain, eyes, lungs, liver, heart, kidneys, joints, bones and skin, basically anywhere that blood flows. Over time SCD can lead to complications such as infections, delayed growth, and severe pain crises. It can also cause strokes even in young children that can affect their physical body and cognitive status or cause death.
Zion has already been hospitilized more than 30 times and is traumatized by the numerous blood draws, IV's , X-Rays, MRI's and invasive procedures. In addition to Sickle Cell Disease, Zion wears bilateral hearing aides and requires a feeding tube that delivers formula thru a tube in her belly due to feeding problems.
Despite all this, Zion is a very happy and funny child. She can be shy at first, but warms up and keeps us laughing. She is so affectionate and loving, and loves snuggling with her mom the most. Zion loves her 3 dogs and is very creative with her imagination.She loves being outside in the warm weather, and enjoys swimming when she can. She attends a special school for hearing impaired children and is learning American Sign Language.
Zion is an only child. Recently my daughter and Zion's father were told about the possibility of having a baby without Sickle Cell Disease who would also be an exact HLA match to Zion. Once the baby is big enough, he or she would go thru a one time stem cell donation and Zion would then have a stem cell transplant. Currently, stem cell transplant is the only known cure for sickle cell disease. The benefit of her having a stem cell transplant when she is young, is that her body would have endured less damage and her organs would be healthier.
In order to give us the best chance of having a healthy child that is an HLA match for Zion, her hematolagist has reccomended they go thru IVF and preimplantation genetic testing. From the time of initial testing to the actual implimentation would be around 6 months. Once the embryo is successfully implanted, the pregnancy is treated as a normal one.
Thinking about a cure for Zion is almost too much to imagine. Unfortunately much of the cost is not covered by insurance.
Please consider making a donation toward this process
We are trying to raise 25,000.
Any funds raised in excess of the costs will be donated to Sickle Cell Disease research.
Thank you for your donations and especially for your prayers for this to occur successfully.
People with this disease somtimes don't live beyond their 20's with an average life expectancy of 40 years. Sickle Cell Disease can harm a persons spleen, brain, eyes, lungs, liver, heart, kidneys, joints, bones and skin, basically anywhere that blood flows. Over time SCD can lead to complications such as infections, delayed growth, and severe pain crises. It can also cause strokes even in young children that can affect their physical body and cognitive status or cause death.
Zion has already been hospitilized more than 30 times and is traumatized by the numerous blood draws, IV's , X-Rays, MRI's and invasive procedures. In addition to Sickle Cell Disease, Zion wears bilateral hearing aides and requires a feeding tube that delivers formula thru a tube in her belly due to feeding problems.
Despite all this, Zion is a very happy and funny child. She can be shy at first, but warms up and keeps us laughing. She is so affectionate and loving, and loves snuggling with her mom the most. Zion loves her 3 dogs and is very creative with her imagination.She loves being outside in the warm weather, and enjoys swimming when she can. She attends a special school for hearing impaired children and is learning American Sign Language.
Zion is an only child. Recently my daughter and Zion's father were told about the possibility of having a baby without Sickle Cell Disease who would also be an exact HLA match to Zion. Once the baby is big enough, he or she would go thru a one time stem cell donation and Zion would then have a stem cell transplant. Currently, stem cell transplant is the only known cure for sickle cell disease. The benefit of her having a stem cell transplant when she is young, is that her body would have endured less damage and her organs would be healthier.
In order to give us the best chance of having a healthy child that is an HLA match for Zion, her hematolagist has reccomended they go thru IVF and preimplantation genetic testing. From the time of initial testing to the actual implimentation would be around 6 months. Once the embryo is successfully implanted, the pregnancy is treated as a normal one.
Thinking about a cure for Zion is almost too much to imagine. Unfortunately much of the cost is not covered by insurance.
Please consider making a donation toward this process
We are trying to raise 25,000.
Any funds raised in excess of the costs will be donated to Sickle Cell Disease research.
Thank you for your donations and especially for your prayers for this to occur successfully.
Organizer
Deborah Hicks
Organizer
Trenton, NJ