On March 30, 2001 we lost our son Justin A’de McGirt to what we thought was “Sudden Infant Death Syndrome.” We now know that he had “Spinal Muscular Atrophy.” He was only 2˝ months old. His resting place is in Queens, NY at the All Saints Cemetery. In 2002 we decided to try for a new baby, but that pregnancy didn’t go well. We miscarried at 8 weeks gestation. In 2003 we found out that we were expecting again. We were over whelmed with joy. On January 29th 2004 at 2:15 pm our precious bundle of joy was born at Jacobi Medical Center in Bronx, NY weighing in at 4 lbs 13 oz 19 inches long, Aaron Jai McGirt. He was a perfect baby. When Aaron turned 4 months at his routine doctors’ visit we discussed him not reaching his milestones. The doctor ordered a series of blood tests. As we were waiting for his results from his lab work one early afternoon we noticed that Aaron was having trouble breathing. Then he started to turn blue. We called 911 and the ambulance rushed him to the hospital S.U.N.Y. Down State Medical Center. His results were rushed but the doctors had an idea of what his diagnosis would be. One week later we got the results and it was the most terrible news a parent can ever receive Aaron was diagnosed with Spinal Muscular Atrophy type 1 the most severe. We were devastated and confused. We didn’t even know what SMA was at the time.
My son’s genetic disorder has impacted our lives tremendously. After his diagnosis at the age of 6 months Aaron had to have surgery and have a tracheotomy and a G-tube placed, and he was put on a ventilator to help him breath. While he was recovering from surgery Aaron received a special visit from Rap Star Lil’ Kim he thought he was a star because he was all over the news and newspapers. One month later we decided to move to Connecticut to be closer to my mother for support and help with Aaron and to see if we would be able to bring Aaron home with us. He then lived in the Hospital for Special Care in New Britain, C.T. We have not been able to bring Aaron home because he requires 24 hour Nursing and a handicap accessible home that we cannot afford. Due to Aaron’s diagnosis Aaron has no movement and he requires 24 hours ventilation and nursing. He has got so much equipment it’s hard for us to fit him and all his equipment in a regular size apartment. We would like to one day be able to bring my baby home, he has been in a hospital setting since he was 5 months old. Aaron recently underwent scoliosis surgery to try and correct his curve and to try and save one of his lungs, he currently lives in The Children’s Hospital of Richmond. We moved to Virginia in April of 2012, again trying to see if living here in Virginia we are able to afford buying a home that can be suitable and accessible for him. Aaron is currently attends public school and is in the 3rd Grade with all satisfactory grades and many emerging skills. He also has managed to do his first communion.
When Aaron was first diagnosed the doctors told us that Aaron would not live past 2 years old, Aaron is turning 9 in January and he is a strong boy and that’s why he is OUR SMA HERO! He says that he is happy and wants to keep fighting and that is why today we continue our fight against SMA.
We would like to thank our family and friends for all the support they have given us through all our heart aches and we most of all want thank the nurses and doctors from S.U.N.Y. Downstate Medical Center in Brooklyn, NY for all that they did for Aaron while he was under their care after his diagnosis. We would also like to thank Easter Seals CT the Birth to Three Program and the therapists that worked with Aaron throughout his years in the program. Antonietta Kelly his teacher, Patricia Clarke his occupational therapist, Jill Fazekas his speech therapist and Sheryl Hart his physical therapist (who by the way worked really hard in funding his stander through Birth to Three ). Special thanks to Wendy Wein who was an excellent social worker that we admire for all her great advice and excellent family support. Aaron had an awesome team and we will always be thankful.
We would like to dedicate this website to the staff at The Hospital for Special Care because with all their love, dedication and support Aaron is now today 8 years old. We thank you!
Myra, Ade, Aaron, Brian (SMA free) & our newest edition Dylan (SMA Free)