Nine-year-old Nathan is no stranger to getting stitches: he has already had over 1,000 put in because of the rare syndrome he suffers from that makes his paper-thin skin tear very easily.
For kids, skinned knees, sprained ankles and broken arms are fairly common summertime booboos. But for Nathan, the risk of injury is much higher, making it a season for extra caution and concern.
He has classical Ehlers-Danlos syndrome (cEDS), a rare collagen disorder. cEDS is characterized by joint hypermobility, skin hyperextensibility and generalized connective tissue fragility. Nathan’s skin is extremely delicate as a result and prone to various types of wounds.
After a seemingly endless succession of bruises and trips to the hospital for stitches, Julie and Sébastien, Nathan’s parents, suspected something wasn’t quite right. But they had no idea that their “Jello baby,” their pet name for him, was suffering from a rare disorder. He was diagnosed with cEDS when he was around 18 months old, after two doctor friends of theirs suggested he go into Sainte-Justine for genetic testing.
Nathan is a familiar face at Sainte-Justine. Especially in the Plastic Surgery Department. When he gets hurt, his skin splits in an irregular way, requiring the expertise of the teams at Sainte-Justine, including the one led by Dr. Daniel Borsuk, the Chief of Plastic Surgery. The lack of collagen in his body also slows down the healing process. Stitches have to stay in for six to eight weeks, compared to the usual three to fourteen days.
« With Nathan’s syndrome, winter is now my favourite season! His snowsuit helps protect him, and he doesn’t get hurt quite so often when he plays. As a parent, it’s hard to have to limit your children from taking part in “normal” activities like soccer and biking. »
A life full of challenges
The zebra is a symbol for rare diseases, since every zebra has a stripe pattern that is unlike any other. The unique pattern of scars on Nathan’s skin makes the comparison even more relevant.
Nathan’s condition affects his entire body, not to mention his entire life. He has been going to Sainte-Justine and the Marie Enfant Rehabilitation Centre to see various specialists (cardiology, ophthalmology, orthopedics, dermatology and plastic surgery) and therapists (psychology, psychotherapy, occupational therapy, physiotherapy and speech therapy) since he was very young.
« Every day, Nathan learns how to cope with his disease and accept that he is a zebra among horses. He will have his fair share of challenges to face, but he can rely on a whole group of incredible people who are helping him lead a normal life. »
How your gifts are making a real and lasting difference for Nathan
The first few years of Nathan’s life were riddled with wounds, trips to the ER and one medical appointment after another. His skin bears the marks of his condition. But thanks to the generosity of the donors to the Foundation, he has had access to special protective apparel since starting school. The result: fewer injuries and fewer tears to fix.
With the help of Sandra Sanchez, a physiotherapist at the Marie Enfant Rehabilitation Centre (CRME), Julie and Sébastien found a company that could design and manufacture padded undergarments to give Nathan an extra layer of protection while he’s away from home. The Fonds Metro d’aide aux familles de Sainte-Justine helps cover the cost of making this special clothing, thus opening up new horizons for Nathan and changing his life every single day
« The padded undergarments help keep Nathan relatively safe so he can go to class, play with his friends and take part in a number of activities. He hasn’t been hurt anywhere near as much since he started wearing it. Your generosity is helping him to grow and thrive from one season to the next, just like other boys his age. »
Special needs, life-changing gifts
Health conditions are a reality for children like Nathan all year round. As a result, they often can’t do things other kids can do. But the generosity of caring people like you lets them get the help they need, through the Fonds Metro d’aide aux familles de Sainte-Justine. The fund is linked to the hospital’s Social Services and has been used to address a wide range of specific requirements, including the following:
- A customized brace was created to make recess and playtime safer for a child whose abdominal muscles don’t contract properly.
- The steps of a daycare centre were redesigned to ensure a child with dwarfism can get around more easily.
- An electric wheelchair was developed specifically for a 17-year-old who is prevented from walking and simple movements by severe muscle spasms in all four limbs. Without donors like you, he would not have been able to acquire this costly device, which lets him move freely within his home.
« The needs are enormous and the possibilities, endless. But it takes money to help children enjoy a better and more independent quality of life. Your donations make our work as therapists even more meaningful and lets us do so much more. Every day, I see how your generosity changes lives. »
For Nathan and all the youngsters out there who can’t appreciate the joys of summertime as much as they should, please give from the heart and open a world of possibility to them. Because summer is a time for kids to be kids.
