We are trying to raise money to build our severely handicapped daughter a master bedroom on the first floor.
She is the most beautiful child and warms the hearts of many. My dream is to have a room that is dedicated to her handicap needs.
Ella Rae Wilson - Her Story
Ella is a beautiful 7 year old girl. She has a rare genetic disease called carnitine translocase deficiency.
Carnitine translocase deficiency is a very rare metabolic condition. With only 30 cases being reported. Most infants not surviving past 31 hours. And no reports of long term living.
Carnitine-acylcarnitine translocase (CACT) deficiency is a condition that prevents the body from using certain fats for energy, particularly during periods without food (fasting). Signs and symptoms of this disorder usually begin soon after birth and may include breathing problems, seizures, and low blood sugar.
Ella lives with her mom Shauna, dad Steven and big brother Hunter in the state of Ohio. She was born with no problems. We were released from the hospital to come home with our beautiful baby girl. Everything was fine. About 5 hours after getting home that day I noticed Ella would not eat and was very sleepy her temperature had dropped to 93 degrees. Soon we were being rushed to children's hospital. When we got there they started doing chest compressions. Ella's heart stopped several times during that awful night. She was also acidiotic. We were on a emotional roller coaster from that point on. Ella had severe brain damage from the acidosis and her heart stopping several times. They stabilized her but the extent of the damage would not be known for several months. At that time we were told she had a metabolic condition and further genetic test would need to be done. Then, 3 months later we were told she had a disease called gluteric academia type two. A rare genetic disorder. But they were not positive. She met most of the criteria to have this disease but not all. Regardless of her disease name, the treatment would be the same.
The next 3 years were tough. Ella has had several surgeries and several stays in the hospital. You know you are a frequent flyer in a hospital when nurses and doctors recognize you when you are walking down the hallway. On June 1, 2011 Ella had brain surgery to reduce the number of seizures she was having. Prior to brain surgery Ella had 40/50 seizures a day and cried all the time. Now after successful surgery we only have 5-6 a day and she smiles and laughs which is the best thing in the world. In April 2013 doctors had completed genome studies for Ella.... We now had results! They gave her the diagnosis of carnitine translocase deficiency. Almost six years after she was born, we were told she was even more rare than they thought. They do not know what her future holds because they have never seen a child live as long as she has and we can only hope that we continue on a path of wellness. I know our future holds many more stays at the hospital and probably more surgeries. Ella will always have seizures and complications but she is my beautiful little girl and I would be lost without her. I will always do everything in my power to do the best for her. We have truly been blessed with a precious miracle and am honored to have been chosen to be her mother. Not every one gets to have a child with very special needs. Ella needs total care from the nurses and from me. But still we fight to endure each challenge.
We have people in our house on a daily basis. Yes, we get to know them and they become part of our family. Our door is always revolving with someone new coming in to care for Ella.....except our daytime nurse who has been with Ella since she was just 1 year old. Everyone who meets our little girl falls in love with her immediately. She will sometimes greet you with a fun smile and other times she will cry but she always makes you feel better with a warm snuggly hug. It’s a daily struggle though. The nurses are very nice people and have giant hearts for understanding. I tell them that they are my therapy. Steve and I pick and choose our battles. Most of them over money. We have to be there for each other we have too many other problems to worry about. Arguing would just be a waste of our time. We take each moment one moment at a time and deal with it accordingly. Take a moment and think about this. There is 168 hours in one week.. 108 of them are filled with nursing care for Ella. Then on top of all that, we have PT, OT, ST, and Music one hour each, once or twice a week. We also have a support administrator , a nursing supervisor, a carestar case manager, and a social worker that all make routine home visits. On top of all that we have doctor visits. The latest is we added an Itenerit teacher for Ella.. I have a calendar that is color coded for who is coming and what time they are coming. It’s all so crazy.
Life is challenging for everyone and we all face different problems everyday. In todays world we all want and need materialistic things. I want a healthy child. I want a seizure free child. I want a normal life and normal family. That is not going to happen. We have to accept our differences and move on. I actually love my little odd ball family just the way we are.
Today Ella is developmentally about the age of a 4-6 month old. She smiles and makes noises. She cannot walk. She is dependent on others for total care. She weighs 53lbs and is a very tall six year old. Everyday becomes a challenge to lift Ella and move her from space to space. We have to carry her up and down the steps because her bedroom is on the second floor. It is also a life threatening fire hazard to have Ella on the second floor. If a fire should ever happen in our house Ella has no way of getting out and she is unable to tell anyone she is upstairs. The firemen would have to rescue her from the upstairs. Putting her and them in greater risk. My goal as her mother is to have a first floor master built onto our house so Ella is not upstairs. This room would have everything a handicap child could possibly need and enough space to have all her therapies and equipment in it. Ella has nursing care that is provided through the state of ohio. She also has Medicaid. If a child gets too heavy they put limitations on what a nurse can do and could possibly take away hours if we can not provide a safe work environment for the nurses. Our stairway in the house is not wide enough for a lift and Ella is unable to sit without support. We love the house we are in and really don't want to consider moving when we have enough space on our land to build. Moving forward into our future a room addition would be the most affordable and efficient thing to do for Ella. Making her life and the lives of the people who care for her easier. I never want to be without my little girl. She is the joy in my life and I want everything special for her.
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