Baby Jackson and Family
Donation protected
Feels like just yesterday we celebrated the highly anticipated birth of this little miracle and now I am reaching out for much needed assistance for her and her family. My niece, Jackson Miles Witt, was born March 20, 2016, to proud parents Amber and Dan Witt.
This precious baby's life story made a turn on Memorial day when we received the news that she was being Med Flighted to the nearest trauma one center. She could not hold her arms up and showed decreased movement in her legs and was struggling to breathe. She was put in the ICU and countless tests were performed before the doctors felt her case would need to be transferred to Vanderbilt Children's Hospital. Due to the instability of her condition she had to be transferred again via med flight. Once at Vanderbilt in Nashville, TN little Jackson underwent another battery of tests, with the doctors still unsure what was going on. They did a swallow test showing that her muscles were not strong enough and she was aspirating some of it which meant a feeding tube needed to be put in through her nose. Although she was making some improvement, her diagnosis was still unknown.
On the morning of June 9 she was given an EMG that tests the specific activity in each muscle and when the results came back, it confirmed their worst fear.....SMA (Spinal Muscular Atrophy) a diagnosis none of us had even heard of before Jackson went in the hospital.
I will never forget this morning, I have never cried so hard. I can't imagine what Amber and Dan were going through with this sweet baby girl that was so healthy just 2 weeks prior. There were so many questions and not enough answers.
It turns out that Spinal Muscular Atrophy is a genetic disease and known as the # 1 genetic killer in infants and children. It is degenerative and progressively takes away the basic functions of daily life like breathing and swallowing. SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). Without it, those nerve cells can't properly function and eventually die, leading to debilitating and fatal muscle weakness.
We learned that 1 in 40 adults are unknowingly SMA gene carriers and can have absolutely no family history of this disease. We also learned that there is no approved treatment or cure for SMA.
On top of dealing with the devastating diagnosis, medical bills and living expenses have piled up VERY quickly, and this will continue throughout baby Jackson's life. Although the outlook may seem bleak, Amber and Dan and the whole family are determined to fight and give Jackson the best life she can have. Amber will need to stay home, as caring for Jackson requires full time care to handle her feeding tube, positioning and breathing needs. Dan has missed weeks of work due to the hospital stays and as his job is based off commission, he has not been able to earn much to support the family. Jackson's care will continue to be handled at Vanderbilt Hospital which will require her to be flown from Bristol to Nashville repeatedly because she is unable to travel that far in a car. The family is also looking at the purchase of extensive adaptive equipment..... car beds, specialized airplane seat, feeding equipment, specialized stroller and this is just the beginning. As family and friends, I know we wish we could take this away, erase this nightmare. Unfortunately we can't, but what we can do is take some financial stress off Amber and Dan as they continue to adjust to this diagnosis.
This goal is just the beginning. I know we can help, and EVERY little bit counts and is appreciated beyond words! If you are unable to give, please pray for this sweet family and precious angel God has given us.
This precious baby's life story made a turn on Memorial day when we received the news that she was being Med Flighted to the nearest trauma one center. She could not hold her arms up and showed decreased movement in her legs and was struggling to breathe. She was put in the ICU and countless tests were performed before the doctors felt her case would need to be transferred to Vanderbilt Children's Hospital. Due to the instability of her condition she had to be transferred again via med flight. Once at Vanderbilt in Nashville, TN little Jackson underwent another battery of tests, with the doctors still unsure what was going on. They did a swallow test showing that her muscles were not strong enough and she was aspirating some of it which meant a feeding tube needed to be put in through her nose. Although she was making some improvement, her diagnosis was still unknown.
On the morning of June 9 she was given an EMG that tests the specific activity in each muscle and when the results came back, it confirmed their worst fear.....SMA (Spinal Muscular Atrophy) a diagnosis none of us had even heard of before Jackson went in the hospital.
I will never forget this morning, I have never cried so hard. I can't imagine what Amber and Dan were going through with this sweet baby girl that was so healthy just 2 weeks prior. There were so many questions and not enough answers.
It turns out that Spinal Muscular Atrophy is a genetic disease and known as the # 1 genetic killer in infants and children. It is degenerative and progressively takes away the basic functions of daily life like breathing and swallowing. SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). Without it, those nerve cells can't properly function and eventually die, leading to debilitating and fatal muscle weakness.
We learned that 1 in 40 adults are unknowingly SMA gene carriers and can have absolutely no family history of this disease. We also learned that there is no approved treatment or cure for SMA.
On top of dealing with the devastating diagnosis, medical bills and living expenses have piled up VERY quickly, and this will continue throughout baby Jackson's life. Although the outlook may seem bleak, Amber and Dan and the whole family are determined to fight and give Jackson the best life she can have. Amber will need to stay home, as caring for Jackson requires full time care to handle her feeding tube, positioning and breathing needs. Dan has missed weeks of work due to the hospital stays and as his job is based off commission, he has not been able to earn much to support the family. Jackson's care will continue to be handled at Vanderbilt Hospital which will require her to be flown from Bristol to Nashville repeatedly because she is unable to travel that far in a car. The family is also looking at the purchase of extensive adaptive equipment..... car beds, specialized airplane seat, feeding equipment, specialized stroller and this is just the beginning. As family and friends, I know we wish we could take this away, erase this nightmare. Unfortunately we can't, but what we can do is take some financial stress off Amber and Dan as they continue to adjust to this diagnosis.
This goal is just the beginning. I know we can help, and EVERY little bit counts and is appreciated beyond words! If you are unable to give, please pray for this sweet family and precious angel God has given us.
Organizer and beneficiary
Diane Dunn
Organizer
Brandermill, VA
Amber Witt
Beneficiary
