Sammy-Joe - Quilt Finished in 2006
Born: March 2, 1989
Illness: Trichothiodystrophy, Cerebral Palsy, Autism, Photosensitivity,
Insufficent Immune System, Lactose Intolerance, Ataxia
A Thank you from Sammy-Joe's Family!
Written April 21, 2006
Thank you so much for the Love Quilt, it's beautiful. Sammy-Joe loves it, he isn't well today, but once he saw the Quilt he had a burst of energy and wanted it straight away. He is still smiling, he absolutely loves it. Please say thank you to each and every stitcher and all my love to them all. We are heading to the hospital as Sammy-Joe has a temperature he is taking it with him in the car.
Thank you so much
Love,
Maria, Sammy-Joe and Family
Sammy-Joe's Story
written by mom Maria
TTD is a seriously disabling disorder with a severe skin affliction and serious developmental defects and growth retardation. It can also cause immune deficit cells, premature aging in facial features, cataracts and dental abnormalities, poor weight gain, autistic characteristic such as irritation to high frequency sounds, and repetitive movements and behaviors. There is currently no treatment for TTD.
My son Sammy-Joe has TTD and has only recently been diagnosed. He is now 16 years old. He was born by emergency caesarean section at 38 weeks. He was smaller than expected for a child at that age, and his head was 26% smaller compared to the norm. He was born with curly, brittle hair, short and sparse, small eyes, dry skin and very floppy. He weighed 5lb 2oz and lost a dramatic amount of weight in the first two days of his life.
He lost all of his hair after having a temperature, while having a bath in the hospital. He had difficulties suckling, and failure to thrive. Because of his poor immunity, he has had many stays in hospital throughout his life undergoing extensive tests, Gammaglobulin treatment, surgery and rehydration. He has lactose intolerance, ataxia, speech delay, autistic characteristics, poor weight gain and stunted growth. Certain sounds and lights affect him, triggering him to scream as if in pain, which I now believe at times truly hurts him. He blisters, loses his hair and is in enormous pain.
He is photosensitive to the light and refuses to wear short sleeves due to the sun hurting his skin. For years I couldn't understand why he wanted to wear long sleeves on very warm days. Now I know why.....he cannot be exposed to too much sunlight, he is quite fragile and sometimes unsteady on his feet, and often faints when he is unwell. Aside from all the trials and battles in his life, he is a happy child that has a passion for books, videos, nursery rhymes, The Muppets, animals, stuffed toys and James Hird from the Bombers.
I have often been asked what does the future hold for my son's life, and I would be lying if I said it doesn't scare me. In fact it scares me so much my response is always "nobody really knows". The other children with TTD that I am in contact with are all younger than him, and because this disorder is so rare.
Sammy-Joe constantly amazes me with his incredible happiness and his shear love of life. Like all parents, we want everything for our son, and thinking ahead about what the future may, or may not hold, makes me strengthen my determination to see that my child has every opportunity and experience he deserves. We all live day by day and enjoy every moment with our precious little boy. I'd like to tell you all that as long as we are blessed with Sammy-Joe, we will have all that we need. Everything else seems so unimportant. He will always touch hearts, and even change lives with his smile.
In our world it is easy to understand things, but in Sammy-Joes world it is challenging. Although he is 16, his condition still challenges him in many ways, in so many different ways it gives him difficulties that other people probably wouldn't be faced with and wouldn't need to worry about every single day, things like worries about light, things like blisters constant head pain and severe burning feeling on his skin just from getting undressed to put his other clothes on, it has taught him tolerance, patience and most importantly understanding. I always say that regular people wake up and start a new day leaving all their worries from the days that have past behind them, but not Sammy-Joe, he wakes up and his worries are still there and this gives him great difficulty in understanding why? He doesn't understand why he has to be sick, and says outloud ''help Me , the lights hurt me , the sun hurts me help me ""
I know I never expected for Sammy-Joe to excel this far with his life, he is a fighter and a true inspiration to all of us that truely know him, we see what he must face everyday, day in and day out and he will still try and smile and laugh, with all the doctors and people around him that a poking at him and sticking needles into him. My son is my Hero and is just exactly how I want him, by my side fighting to the end, he is making a difference somehow in this world I know he was born for a reason.
Written by Sammy-Joe's mom Maria on June 13, 2005
