My daughter, Analeigh Rain, was born 14 weeks prematurely due to a premature rupture of membranes when I was 26 weeks along in my pregnancy. She was diagnosed with Chronic Lung Disease shortly after birth and at 4 months of age, a tracheotomy was performed due to respiratory failure. She was placed on full ventilator and oxygen support and finally came home after spending the first 6 months of her life in the NICU at Clear Lake Regional Medical Center in Webster, TX. Soon after coming home, Analeigh began to thrive. She was bottle fed, learning to sit up with minimal support, was able to roll over from her back to stomach, babbled despite the trach, played with her toys, smiled and was learning to crawl. She was also being weaned on her oxygen and ventilator settings. She was a normal, happy baby with the exception of the trach and vent.
At 9 months of age, the unimaginable happened. After a typical day and an evening feeding, Analeigh became suddenly agitated. Her nurse tried consoling her but was unable to determine what was wrong. Her dad went into her room to check on her and almost immediately, she turned blue and stopped breathing. They put her in the crib and began CPR immediately but it quickly became evident that help was needed. I called 911 and during the ten minutes or so it took for paramedics to arrive, the nurse and I continued to perform CPR to no avail. She had no pulse, no life in her. Paramedics took over CPR efforts and moved her to the ambulance in our driveway. Another twenty minutes or so went by and we were told she was being transported to Children’s Memorial Hermann in Houston via life-flight and we should leave immediately to meet the transport team at the hospital.
Upon reaching the hospital, we learned that they lost her again during transport for approximately 5 more minutes but had since stabilized her. As soon as we were allowed to see her, it was evident to me that something was seriously wrong. My baby girl was no longer the same. She was non-responsive to any stimuli and we soon learned that she had suffered massive brain damage as a result of the prolonged lack of oxygen to the brain.
Analeigh is now 20 months old and has many new medical problems she did not have before. She had surgery to have a feeding tube inserted into her abdominal wall because she could no longer be bottle fed. She is now on many medications to treat seizures, high muscle tone, high blood pressure, severe acid reflux and has to undergo regular physical therapy and also vision therapy as she now suffers from Cortical Vision Impairment (CVI). She may never have the ability to eat, walk, speak or be without the trach and ventilator.
So, where is the upside to all of this, you might be wondering? Prior to Analeigh’s birth, I was ignorant to the plight of “special needs” children. Since then, my eyes have been opened and I started wondering what I could do for other kids and their parents facing journeys similar to ours. And so, the Facebook group called Special Gifts for Special Needs was born. Our group’s mission is to provide a simple handmade gift accompanied by a card with words of encouragement to special needs children all over the United States and even in the United Kingdom. Since the day the group was established on December 5, 2011, approximately 50 children have been accepted into the group and sponsored by an individual. With no requirements such as income, diagnosis, severity of diagnosis or any other limiting factor, the group’s goal is simply to provide love and support to these beautiful, amazing and inspirational children and their families.
To date, we have kids with a broad range of diagnoses ranging from ADHD to Spinal Muscular Atrophy (SMA) Type 1 which is terminal. Children with SMA are usually diagnosed around the age of 6 months with a life expectancy of a mere 2 years. Their stories will not only break your heart but open your eyes as well. Some of the kids, such as my daughter, are completely unaware of the gifts and cards they receive in the mail. Their parents, however, are not. These parents are overwhelmed with the knowledge that each new day could be the last their child ever sees and they are desperate, hurting, and in need of someone to reach out to them and let them know that someone cares. While the gifts are handmade and sent to the children, just the simple thought brings a parent to tears. I know this, because I am one of them. The group is just as much for the parents as it is for the kids.
It is my hope that we can one day become an official non-profit organization but we cannot do it on our own. The group currently consists of 50 members/sponsors with the same number of children registered. My dream and goal for this group is to reach as many special needs children and families as possible and warm their hearts with the knowledge that someone is actually listening, someone sees their struggle and it matters. In order to do this, we need more donors and sponsors. I am hoping to find an attorney who will donate their time and resources to helping us become an official non-profit organization and individuals who are willing to donate their time and money to putting smiles on the faces of these hurting people. This is not merely a “Secret Santa” kind of thing. This is our life as parents of these amazing children, our dream to connect with other parents on a similar path, and our hope for the brightest future we can possibly give them.
At 9 months of age, the unimaginable happened. After a typical day and an evening feeding, Analeigh became suddenly agitated. Her nurse tried consoling her but was unable to determine what was wrong. Her dad went into her room to check on her and almost immediately, she turned blue and stopped breathing. They put her in the crib and began CPR immediately but it quickly became evident that help was needed. I called 911 and during the ten minutes or so it took for paramedics to arrive, the nurse and I continued to perform CPR to no avail. She had no pulse, no life in her. Paramedics took over CPR efforts and moved her to the ambulance in our driveway. Another twenty minutes or so went by and we were told she was being transported to Children’s Memorial Hermann in Houston via life-flight and we should leave immediately to meet the transport team at the hospital.
Upon reaching the hospital, we learned that they lost her again during transport for approximately 5 more minutes but had since stabilized her. As soon as we were allowed to see her, it was evident to me that something was seriously wrong. My baby girl was no longer the same. She was non-responsive to any stimuli and we soon learned that she had suffered massive brain damage as a result of the prolonged lack of oxygen to the brain.
Analeigh is now 20 months old and has many new medical problems she did not have before. She had surgery to have a feeding tube inserted into her abdominal wall because she could no longer be bottle fed. She is now on many medications to treat seizures, high muscle tone, high blood pressure, severe acid reflux and has to undergo regular physical therapy and also vision therapy as she now suffers from Cortical Vision Impairment (CVI). She may never have the ability to eat, walk, speak or be without the trach and ventilator.
So, where is the upside to all of this, you might be wondering? Prior to Analeigh’s birth, I was ignorant to the plight of “special needs” children. Since then, my eyes have been opened and I started wondering what I could do for other kids and their parents facing journeys similar to ours. And so, the Facebook group called Special Gifts for Special Needs was born. Our group’s mission is to provide a simple handmade gift accompanied by a card with words of encouragement to special needs children all over the United States and even in the United Kingdom. Since the day the group was established on December 5, 2011, approximately 50 children have been accepted into the group and sponsored by an individual. With no requirements such as income, diagnosis, severity of diagnosis or any other limiting factor, the group’s goal is simply to provide love and support to these beautiful, amazing and inspirational children and their families.
To date, we have kids with a broad range of diagnoses ranging from ADHD to Spinal Muscular Atrophy (SMA) Type 1 which is terminal. Children with SMA are usually diagnosed around the age of 6 months with a life expectancy of a mere 2 years. Their stories will not only break your heart but open your eyes as well. Some of the kids, such as my daughter, are completely unaware of the gifts and cards they receive in the mail. Their parents, however, are not. These parents are overwhelmed with the knowledge that each new day could be the last their child ever sees and they are desperate, hurting, and in need of someone to reach out to them and let them know that someone cares. While the gifts are handmade and sent to the children, just the simple thought brings a parent to tears. I know this, because I am one of them. The group is just as much for the parents as it is for the kids.
It is my hope that we can one day become an official non-profit organization but we cannot do it on our own. The group currently consists of 50 members/sponsors with the same number of children registered. My dream and goal for this group is to reach as many special needs children and families as possible and warm their hearts with the knowledge that someone is actually listening, someone sees their struggle and it matters. In order to do this, we need more donors and sponsors. I am hoping to find an attorney who will donate their time and resources to helping us become an official non-profit organization and individuals who are willing to donate their time and money to putting smiles on the faces of these hurting people. This is not merely a “Secret Santa” kind of thing. This is our life as parents of these amazing children, our dream to connect with other parents on a similar path, and our hope for the brightest future we can possibly give them.
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