“Easter Seals understands the struggle that many families go through, it’s actually for us the best gift we can have,” shares Melba
“Easter Seals understands the struggle that many families go through, it’s actually for us the best gift we can have,” shares Melba, a mom of three who attended Easter Seals family camp for the first time this past summer.
Melba’s oldest son, Nico, has a rare genetic disorder known as Cockayne syndrome. The condition affects the body and mind in a myriad of ways, including premature aging and shortened life expectancy. Nico’s condition is extremely frail and complicated, and doctors often don’t know how to intervene. Melba describes Nico’s condition as being like a Rubik’s cube, explaining “it’s so hard to fix one issue and not expect another issue to be affected.”
“Our world is complicated, and sometimes people don’t understand what we are going through. So to be able to connect with someone who understands the struggle… it feeds our soul and makes our day better.”
While most children with Cockayne syndrome are not expected to live past childhood, Nico will soon be celebrating his 18th birthday. Since receiving the diagnosis at 14 years old, Nico has spent a great deal of time in the hospital. This means that Nico’s family has often been apart over the last few years, as Melba divides her time between the Nico and her husband and two young sons at home. “We were not together as a family, and it wasn’t fun for them,” Melba explains. “I wanted to make good memories, beautiful memories as a family with Nico.” This was Melba’s motivation for trying out a family camp session at Easter Seals Ontario’s Camp Woodeden last summer.
Melba describes Nico as a social butterfly, sharing, “he has always been a very warm and loving kid. He has bright, magical eyes and a contagious laugh… he makes your day so special.” Melba knew Nico would make connections at camp, but his younger brothers are only three and six and she worried about finding programming that worked for everyone. Melba was delighted to find that the Easter Seals camp staff happily accommodated her family and their needs. “They were able to support us and make a special schedule so we could join other families at the same time. It was a very magical experience.”
Your support helps ensure more families like Nico’s have the opportunity to make memories at Easter Seals Ontario’s camps.
Melba and her family will cherish the memories they made together at Easter Seals family camp for years to come. “We have a very fast routine with so much going on,” Melba shares. “It’s only my husband and I, we don’t have any extended family in the area. So this was our first vacation together in five or six years.” Besides the invaluable family time that Easter Seals camp provided, Melba valued the opportunity to connect with others who understand the challenges her family faces. “I always say that we all on this same earth, but each person and each family lives in their own world. Our world is complicated, and sometimes people don’t understand what we are going through. So to be able to connect with someone who understands the struggle… it feeds our soul and makes our day better.”
In the face of unimaginable challenges, Melba radiates gratitude. “Nico has shown me unconditional love,” Melba explains. “He has been my mentor in life, and I wouldn’t ask for something else… My child is perfect the way he is.” She is thankful to Easter Seals donors not only for the opportunity to bring Nico and her family to Camp Woodeden this past summer, but for all of the support she has received since they moved to Canada. “Easter Seals has provided a lot of support,” shares Melba. “I would say it has helped me navigate my life in this big important journey I am on with Nico. I just want to say thank you, it has been so meaningful to me.”
“Kids like Nico, they go through so many changes and their life is cut short,” Melba shares. “But they enjoy life, you can see that they enjoy every second. So we should all live today, not tomorrow. Give love today and you will receive even more back.”
“Kids like Nico, they go through so many changes and their life is cut short,” Melba shares. “But they enjoy life, you can see that they enjoy every second. So we should all live today, not tomorrow. Give love today and you will receive even more back. When you care, when you give… you will always get more back. Fill your heart with compassion and you will see the world in different colours.”
We are grateful to all Easter Seals donors who have opened their hearts to make experiences like Nico and Melba’s family camp session possible. Through your compassionate generosity, we can help more families find moments of solace, connection, and joy at Easter Seals camps. Thank you for continuing to illuminate a brighter path for Easter Seals children and families.