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Sponsor a Child in Need: Autumn

FUND IT FORWARD received this letter from her parents:

Autumn is a 6 year old (soon to be 7 years old), we live in Ottawa Ontario Canada. Autumn is our oldest daughter and was born Feb 5th 2008.
 
When we finally had Autumn just like every new parent we instantly fell in love with our new baby girl. She was absolutely perfect and we couldn't wait to see what the future held for her!
 
When autumn was a few days old we went for a routine checkup with a pediatrician, as a first time mom I wasn't sure what to expect but I figured it was pretty typical stuff. When the doctor was done examining Autumn he said he needed us to meet him in his office, he needed to discuss some concerns he had regarding Autumn. Just like any parent at this point I was extremely worried, what could possibly be wrong with my baby girls, she seemed so perfect! When we arrived in his office he had several books turned to sections outlining Down syndrome, at that time he told us he felt as though Autumn had a lot of characteristics of down syndrome. At this point I had thought this doctor had completely lost his mind, Autumn didn't have any of the characteristics of down syndrome. We left his office and refused any further treatment.
 
A few days later Autumn had an appointment at our children's hospital with a cardiologist, she was born with a heart murmur and we had to have it checked it. While meeting with the doctor I mentioned our experience with the pediatrician and asked for his opinion, I was wondering if he thought Autumn may have down syndrome. He took a quick look at her and said he didn't think so but it really wasn't his field and offered to refer us to genetics if we worried about it. We accepted his offer. He made a quick call down to genetics and was able to get us in that day only a few hours later!
 
We went to genetics, at this point I was fairly convinced I was going to hear "there is absolutely nothing wrong with your daughter and we have no further concerns" but to my surprise I heard the complete opposite. The doctor felt as though Autumn may in fact have down syndrome, I was in shock, this was not at all what I was expecting to hear. I sat in the office staring at Autumn and thinking there is no way that I am capable of raising a child with special needs, I myself was only 21 years old and wasn't sure how I was going to raise a "typical" child and now here I am possibly raising a special needs child. The doctor gave us paper work for blood work and said we should hear from her in a week or 2.
 
That was the longest week and a half of my life, every phone call that came in I jumped and ran to the phone. Finally she called, and I heard "your daughter does not have down syndrome" that was all I heard, she wanted to have a follow up appointment and she did explain why but all I heard at that moment was "your daughter doesn't have down syndrome".
 
The next week we went back to meet her and we sat in the same little office as our first visit, she came into the room and said "well as you know autumn doesn't have down syndrome, but we did find another genetic deletion". I was confused at this point, I was never very with this type of stuff in school and after explain it several different ways she finally just came out and said "your daughter has a very rare genetic syndrome which I have never diagnoses, one I don't know much about except for what I have read online, I don't know what to tell you about this syndrome but I know Autumn will teach us a lot about it along the way". I was in shock, how could this be. I asked her if this would affect her life expectancy and she said no that based on her research she will live a full life expectancy but will have many health issues along the way. I was happy with that answer, if it wasn't going to affect her life expectancy I could deal with anything else that was going to come my way.
 
For the first 2 year we didn't really see any issues, she had some delays but her behavior and sleep were both fairly typical, I was in denial and was sure that the tests were all wrong!
 
Shortly after Autumn turned 2 we started seeing lots of behavior issues, she would throw herself to the floor and bang her head off the floor several times a day, we quickly started padding everything, the floors, sharp corners of the walls everything was padded to protect her.
 
By the time Autumn was 2.5 not only was her behavior at an all-time high but sleep was a thing of the past, she would wake up several times a night, she wouldn't go to sleep until 1130pm and would be up by 1am, we had counted and she was sleeping 3 hours in a 24 hour period. We were exhausted and fading fast. At this point we had also added a new baby to the mix so those 3 hours of sleep we were getting really was not enough.
 
We did some research and spoke with some families with SMS and soon found out we try melatonin, with SMS kids produce melatonin in the afternoon and not at night, so there afternoon is our midnight which explains some behavior’s that come out around that time! I rushed to the pharmacy and picked up these melatonin strips, all of our questions have been answered and we would soon get sleep!!! We started the melatonin and sleep started but behavior’s had increased, and at that point they increased to the point where she was about to get kicked out of her daycare center, we had to choose between sleep and behavior. We choose to lose to sleep and get her back on track behavior wise.
 
When Autumn was 4 her father and I separated and sleep became even worse and I had no one to take shifts with now! After several sleepless weeks I broke down and went to her doctors and explained I needed sleep I needed something to help her sleep, I needed to get things somewhat normal at home and we were both way to exhausted to even know where to start at that point. Her doctor prescribed her some meds which we are still using to this day for sleep!!!!
 
Unfortunately as Autumn has been on the meds for several years now her body is becoming immune to these meds and sleep although it is much better the 3 hours a night it is still only 5 maybe 6 hours a night. I have since gotten engaged and now there is Autumn and her Sister Amelia but also 2 more kids who have come into the family. When Autumn wakes up at night she wakes up all of the kids, so we now have 4 kids who are going to school and really haven't gotten any more then 5 or 6 hours of sleep. By the time we get home from work and school we have 4 very moody children who are exhausted.
 
The safety sleeper would give us peace of mind, autumn could be in the safety sleeper at night and can be safe, and the other kids would get a full night’s sleep. When autumn has a bad meltdown now she hurts herself but also attacks other people including myself and her siblings, at this time we don't have a safe space for Autumn to go to. We have to restrain her the best we can and at 6 years old and 60 pounds it isn't easy for me to do, with a safety sleeper she would have the safe space she needs to go to when she is over whelmed and needs to calm down. I have been saving for 1.5 years to try and save enough funds for a safety sleeper but everything I start saving an emergency comes up and the funds have to go. I recently found out I am pregnant, and as much of a blessing as this is my first thought was "how am I going to go this safety sleeper". I had reached out to a few local charities but the funds were just not available, insurance would not cover the cost of the safety sleeper. I hadn't stopped my search but I took a break to enjoy the holiday season.
 
When I read the email saying that an anonymous person donated funds for an SMS family to receive a safety sleeper I was in shock, I read the email several times just to be sure I wasn't misreading anything. I then cried, I cried thinking about someone being so generous, someone who clearly understand the value of a good night sleep, someone who understands what it feels like to not be able to keep your child safe, someone who knows what it’s like to have to literally monitor your child 24/7 our of fear of what they might do. This person clearly understands SMS and has lived it. I am still at this time in shock that we have been given this opportunity, this opportunity to get a good night sleep, to keep my baby girl safe and for the first time in 6.5 years to have peace of mind, to know when I put her to sleep she is in her bed, she can’t hurt herself, she can’t go anywhere she is safe.
 
I will pay it forward, I promise this person who has made this generous donation that I will pay it forward and I will raise enough money one day for another family in need to receive a safety sleeper.
 
Thank you for taking the time to read Autumns story and thank you so much for this opportunity, as I have said I really can’t put into words how thankful I am for this, I really don't think I will ever be able to express how grateful I really am to receive this and I promise I will pay it forward.
 
Thank so much,
Melissa & Autumn

January 2015

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