I am a Florida mom with a child with Wolfram Syndrome. Actually, he’s no longer a child but he will always be my baby. My son is now 24, and has been affected by this disease since he was six years old. At that time, we lived in New York City with some of the best hospitals and doctors in the country. And not one of them even knew what Wolfram Syndrome was. All they could do is treat each symptom separately and hope for the best. They told me to give him the best quality of life I could because he would not make his 18th birthday. Thankfully, they were wrong.
After the initial anger and grief of the diagnosis, I slowly came upon acceptance, peace and then gradually, the permission to smile and be happy. I focused on living my life and learning to enjoy the everyday things, like your time together. When you know that tomorrow might not come, it changes you as a parent. Sometimes I come home from work and am exhausted from being up all night worrying about his blood sugars being too high or too low. Sometimes I just want to veg on the couch and watch TV but then my son may approach me, “Mom, I have to tell you something…” It may not be important to me, but it is to him so instead of saying “Not now, I’m tired, I’m watching TV, tell me later” I turn off the TV and cherish the fact that he loves me enough to share his thoughts and fears. Knowing that there may not be infinite tomorrows, my time with my son becomes the time I look forward to the most in my day.
Not many people know the feeling the sudden loss of all the hopes and dreams you have when bringing a child into the world. As a mom, my job is to fix the booboos and take away all the pain to protect my child from the bad things in his world, his school, and his life. Sadly in this case, I was powerless. It is so frustrating, and I’ve cried until I’ve had no more tears to cry. I have lived with the hope, and the fear, and the anger and the disappointment and the loss of expectations when there was no hope, no cure, no research, no information….no help. I have questioned my religion, my God and my faith. Why did this happen to my only child? It just wasn’t fair. It’s like mourning the loss of your child every day, but the loss has yet to come. I woke up almost every morning repeating the pain I felt from the day before. To make it worse, he was picked on throughout school, teased by his peers, and had very few friends growing up who had the heart and guts to defend him when he was being treated unfairly.
For eleven years, there was no hope, so I settled with acceptance, and made peace with God and tried to have fun and enjoy whatever time I would be granted with my son. Seven years ago, the research and clinics were started, along with the Snow Foundation to help them continue. With that came a new hope for a cure in the new future. Yet with this new hope, I’m faced with new fears: What if the trials are unsuccessful? What if the research isn’t funded? What if the cure is unaffordable or unavailable to the families who need it?
Our best hope is in organizations like the Snow Foundation who can ensure that research for the cure continues and that patients have both support networks and advocacy. I ask anyone reading this to please consider donating to this important cause to help save my son’s life…..to save all these children’s lives.