As a parent, you want to give your kids everything they need as well as the best of the things they want. I am no different, except that my child has a disability. This is our story…
I am Misty Partee, mother to Tori Nicole Partee. Tori was diagnosed with Spinal Muscular Atrophy-SMA on May 25, 2007. That was the day before her 1st birthday. SMA has no treatment and no cure. This was such a terrible blow for our family and we had a difficult time learning to cope with this life threatening illness. SMA causes severe muscle weakness and problems with lung functioning. Fifty percent of those diagnosed with SMA die before their 2nd birthday. It took a long time to accept the fact that we had a child with a disability. You never think things like this could ever happen to your child. Eventually, we accepted the life that God chose for us and we are so blessed that God placed Tori in our lives. We have always thought she was absolutely perfect and we love her so much. Like other parents, we want the very best for our child. The problem is that when you have a special needs child, the things they need can cost alot more than other children. Her 1st wheelchair cost $23,000.00 and she had other needs as well. She had a feeding tube and nisson surgery, as well as a spinal fusion. She has equipment that she uses each day like a feeding pump, a ventilator, cough machine, pulse ox machine, AFO’s, leg splints, hand splints, vest machine, suction machine, hospital bed, wheelchair, bath chair, potty chair, car seat, child rite seat, and tamato seating system. These are things that we use everyday. We had to purchase a van so that we could take her wheelchair places. For the first couple of years, I would lift her wheelchair in and out of the van myself because we didn’t have the money for a lift in our van. Now, that doesn’t seem like such a big deal, except that her wheelchair weighed 109 lbs. and I weighed about 120 lbs. I also have 2 rods in my back from a spinal fusion due to scholiosis from when I was 16. I am not supposes to lift over 20 lbs. I tell you this because this is how I came to hear about the “Baby Sharon Fund.” Tori was in the hospital with pneumonia at Arkansas Children’s Hospital and our PalCare nurse, Mrs. Linda was visiting Tori. I was telling her about how difficult it was to load Tori’s wheelchair in our van and all about our lack of funds to purchase a lift. Mrs. Linda was so wonderful and said she would see if she could help find a solution to our problem. She talked to one of ACH’s social workers (Mrs. Cathy) and found out some great news for us. The “Baby Sharon Fund” was told about our family’s situation and immediately came to our aid. They paid for the lift to be installed in our vehicle and our lives suddenly became much easier. We were so grateful. Now I could take better care of Tori and myself. This sounds like such a happy ending, but this is just the beginning of our journey with the “Baby Sharon Fund.”
A few years later, Tori was in the hospital again with another pneumonia and I was talking to Mrs. Linda again about our future plans for Tori. We had decided to get Tori a service dog so that she would always have a friend to love on and share companionship with. The cost of the service dog and our trip to go get him was going to cost about $7,000.00. We had raised $6,000.00 in our community and were so excited to be so close to fully funding her service dog. Mrs. Linda once again said she would like to see if she could help us out. She went to the “Baby Sharon Fund” committee and told them our story. They gave us the last $1,000.00 we needed to get Tori’s service dog. His name is Trouble and he is a Havenese (small breed). We never asked for the help of the “Baby Sharon Fund,” yet they helped us all the same. They have lifted burdens from our shoulders that were not theirs to lift. When you are the parent of a special needs child, you can sometimes feel as if you are all alone and no one cares, but that is never the case. We have been so blessed by our community and the “Baby Sharon Fund” will never be forgotten by me or my family. Thank you for all of your support and God bless everyone involved. Our family’s lives have been enriched by the love and kindness shown to us. We will never give up hope for Tori and many thanks to any donors that help support this wonderful, life changing organization.
Love,
Misty Partee & Family
