Why I Won't Keep Quiet About Researching a Cure for Canavan Disease

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An open letter to families affected by Canavan disease:

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Ilyce with her son, Max.

Canavan Research Illinois (CRI) is funding more research to treat and cure Canavan disease than any other charitable organization in the world. This didn’t happen by accident; it’s taken me 18 years to get to this point. My son Max was and still is the motivation behind my work and mission: to discover treatments that can help children diagnosed with Canavan disease. This is my personal choice and my personal mission. I want to make sure no other parent of a child with Canavan should ever feel like they need to do what I’m doing, join my efforts, or even support CRI.

I realize I am extremely prolific in writing about the success of our research and promoting my organization through social media. I have excitedly shared our breakthroughs with other families in parent groups. This is my way of sharing the fruits of our research and letting people know about things they can do, if they choose, to potentially help their child’s health and quality of life.

My mission is to work towards helping affected children by funding research. Sometimes people may not have the opportunity to learn about those advances, so I like to share that information with other parents. This should in no way make a parent feel guilty for not joining me, or feel shame because they don’t want to give their children experimental medication. My goal is to make the information available to other parents, so they have the choice I never had when my son was a baby.

When I talk about my own son it is because he is 18 and a half years old, and still here. He’s still doing well and he has been taking and testing many of the things that can offer help to other children. I am not comparing him to anyone else’s child, but trying to offer hope to families who are still being told there is nothing they can do, and that most kids die between 2 and 4 years of age. This is not usually the case, and no one should have all their hope shattered without seeing the other side of this disease.

I share my story with other families to help show some of the positive things. I share my story with our donors and supporters to let them know we are making progress because of their help. I share my story to let people know what it is I’m doing with the hard earned money they choose to donate. But, I do not share my story to ask, urge or shame any other affected family into joining me or giving their child the same medicine I give my son. I share my story in order to share information, and let people know there are choices and options available to them.

I didn’t get to where I am today by being quiet; that’s not my personality. This was all my choice, and my own sacrifices to make. I would never ask anyone else to do what I am doing. Canavan Research Illinois never has and never will rely on money from families raising children born with Canavan disease to financially support research. Instead, we have a large and loyal donor base. Of course there are many families who choose to do a fundraising event, or donate money in honor or in memory of a loved one. That is wonderful and appreciated because everything helps! But, I do not urge or force anyone to do this — it’s a very personal choice. I have chosen to not raise any money for my own son’s medical bills; many people have, and that is also a personal choice. I feel as the president of a public charity doing so could be confusing. So, I only raise money for CRI — my personal choice. I am not wealthy. We live in a small, modest ranch home with no basement. My two boys share a room so I can work from home and enable CRI to have an office in the third bedroom.

I am sharing with other affected families my true goal and intent as to why I post about my organization and my own son. I realize sometimes intent can be misinterpreted, because writing doesn’t always communicate the author’s tone. I would not try to force or shame anyone into joining me on my mission, make anyone think they should be doing more (or doing anything), or try to make people think that by sharing information about my son’s progress is to make him seem better than another child.

I share these things so people who are interested can access the information to have options and a choice if they want to pursue anything else that perhaps they didn’t even know existed.

Please contact me at [email protected], if you have any questions or would like more information about Canavan Research Illinois. We encourage sharing information with each other, without feeling obligated to do anything, join anything, or agree with anything. Our children share a diagnosis, and even though we are not all on the same path, we are all in this together.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When I Was Told There Was Nothing I Could Do to Save My Child

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When my 4-month-old baby, Max, was diagnosed with a fatal brain disease, I was told by doctors to “not become attached to him” and to look for a pediatric nursing home instead.

In desperation I contacted the largest organization I could find that had anything to do with Canavan disease. I was so excited to have some hope after initially hearing there was absolutely nothing I could do to save my precious child. But my hopes were dashed again when the woman on the phone told me about the wonderful grief counseling available, support groups and once-a-year family conference.

I just kept asking about treatment or anything I could do to help my baby. Unfortunately, the only thing they had to offer was emotional support and a family reference guide to help connect affected families. These things seemed wonderful and absolutely essential — for someone else, but not me.

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Ilyce’s son, Max, when he was young.

I didn’t want support or comfort. All I wanted was to save my baby. That’s it, that’s what I wanted. I wanted someone to do something to save my Max. I was determined to be the exception. I didn’t care what anyone said. I absolutely refused to lose my child, and my stubborn refusal to accept the diagnosis has grown into the largest organization in the world dedicated solely to curing Canavan disease.

No matter what else happens in my life, I know my child has become an adult, and I was able to set in motion treatment options for children diagnosed since his birth. The path I chose has oftentimes been lonely and met with resentment and even hostility. But I always knew in my heart if I absolutely refused to lose Max, I could choose to dedicate my life to saving him. This wasn’t the standard course. It was a grueling uphill battle of parent-driven research and experimental medicine. Max is still here, and I will fight with every fiber of my being to keep him here as long as possible.

No one should ever take away your hope.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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How I Always Say Goodnight to My Son With a Life-Limiting Illness

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Anyone who knows me knows about my son Maxie and his lifelong battle with Canavan disease. I have the obvious challenges associated with raising a son with a life-limiting illness, but our life is happy. Max is thriving at 18 years of age.

The charitable organization I founded has grown into the largest financial supporter of research to help children born with Canavan disease. I don’t think it’s helpful or productive to share too much about the pain this disease often brings to my life. But with that said, I would like to share something that could potentially affect anyone. And that is a simple kiss goodnight and making sure our kids’ — all kids’ — last feeling upon falling asleep is knowing they are loved and cherished.

When raising a child with a life-limiting illness, we as parents know the risks of our kids getting very sick and passing away at any time. We feel that even though they are living with a fatal illness, we would get to say goodbye. Sadly, this is not always the case. I have known a few children living with Canavan disease who went to bed happy and healthy and for whatever reason never woke up.

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Ilyce giving Max a kiss.

I know this seems like a peaceful way to go, and it may be. But that is an important lesson I have learned. Just because my child has a fatal disease and could die from a common illness does not mean I will be by his side holding his hand as he leaves this world. This is how I’ve always imagined his last moments would be. I thought I would have the luxury of being there to comfort him as he took his last breath. That’s until last year, when a healthy child with Canavan disease passed away during the night. Then it happened again, and again. It’s probably been happening well before I was aware a child with a disease like Canavan could go to sleep happy and healthy and never wake up.

I now see that wanting to be there may actually be selfish because it would mean Max might pass due to a bad illness or seizure. Yes, I’d be there trying to comfort him, and smell him, and hold him until the last second of his life. But with the warning might come some illness and suffering.

So I kiss Max goodnight every night like I’ll never see him again, and my other son Alex, too. Is this healthy? Who knows, but that’s why I feel agony when I kiss Maxie goodnight, and joy because if something did happen then this kiss would be my last memory of him. A happy smiling boy giving his mommy a kiss goodnight.

Let’s all try to go to sleep feeling loved and happy. If that happens to be our last memory of someone, there is no way to go back and change it.

Kiss your kids too much, hold them too tightly and for too long. They will go to sleep feeling your love all night. Tomorrow is never promised!

boy lying down and boy next to bed smiling
Max (left) and his brother Alex.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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3 Tips for Dealing With Roommates When You Have Autism

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Chances are, at some point in your life you are going to live with a roommate. If you have autism, here some tips on making it the best experience possible.

If you have any ideas for videos you’d like to see, please send me an e-mail to [email protected].

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To the Little Girl With Apert Syndrome Who Feels Like She's All Alone

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Apert syndrome. Not many people know what it is, and no one would expect 7-year-olds to figure it out on the spot, either. No one seemed to understand how a child could be born to look so remarkably different than the rest — not even the one the disorder is affecting.

The closest definition a 7-year-old with Apert syndrome would be able to come up with is it’s something that causes the kids around her to shy away from her. It’s something that gives grief and loneliness and makes her feel as if she has to sit by herself at a lunch table because she feels too awkward and nervous to approach anyone because of how they react to her. It’s something that makes her constantly ask herself, “Why me?”

This is for the 7-year-old me. This is for the girl who spends all her recesses on the playground, walking around by herself because everyone else has drifted off into groups and wouldn’t invite you to play with them. Be patient. You’ll soon surround yourself with a bunch of friends, ones who will love you unconditionally no matter what, and they will be there for you through every obstacle you come across. They will never leave just because you look a bit different from them and had to have many trips to the hospital for surgeries.

I speak to the girl who was often scolded by her mother for not being on the same level of maturity as the rest of her peers (as mature as grade school children can be, at least). You’re going to grow and carry a specific type of wisdom not many people will be able to see with anyone else. It’s the wisdom to judge people on their character, whether they have a beautiful personality more than a beautiful appearance. It’s the wisdom to always hold out a hand to someone in need, no matter where they come from, how they look and how they live. Before you know it, you’ll be right there with your peers, proving your maturity.

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I speak to the girl who grew up living a life of struggles, doubt and judgment. Who didn’t think she would go far in life because no one properly welcomed how she looked compared to the others around her. Don’t give up. Because one day, you will find happiness. One day, you will find confidence just being yourself no matter what society thinks of your Apert syndrome. One day, you’ll find yourself surrounded with friends who will love you the way you are no matter how you look or what you do.

Don’t give up. 

One day you won’t be the lonely girl on the playground.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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The Difference That 5 Seconds Can Make

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I only had a moment to run in for an emergency stop at the grocery store. I had so much stuff to try to fit in that day, like trying to find big boy pajamas that buttoned down the front. I had just found out my sweet little boy had to have brain surgery.

mom kissing her son on the forehead
Donna and her son.

During the first few days of learning he had Chiari malformation, an incurable condition, and needed surgery, I had such a hard time being in public. It was difficult seeing everyone go about their lives when it took everything I had to not fall apart with worry about what was to come. The hysterical emotions rocketing through me at that time made it exceedingly hard to fight the urge to scream, cry or both. So a trip to the grocery store was not an easy task that day.

My goal was to get in and get out, and I had almost succeeded when I turned the corner and passed her. She looked me up and down, judgement etched on her face, then scoffed and smirked as she passed. Maybe she was just having a bad day. Maybe she didn’t like the way I looked or what I was wearing. Who in the world knows? I made a beeline toward the register swallowing back tears, refusing to allow them freedom until I got to the car.

The whole incident only lasted five seconds, but in that brief moment, my fragile spirit was crushed. Although it’s been over a year since my son’s surgery, I still have not forgotten the look on her face that day in the grocery store. It woke me up and got me to thinking. We have hundreds of five-second interactions every day, and we really have absolutely no idea what others around us are going through. It made me realize how in just five seconds, we have the power to change things, to go a little further, or to do a little extra for others (even encourage a mom who is carrying a world of worry on her shoulders).

In just five seconds, I can smile and ask how you are doing, or give you a compliment. In five seconds, I can look you in the eye and acknowledge you instead of making you feel less or even invisible. In five seconds, I can give my children a few more kisses or a big bear hug rather than say I’m too busy. In five seconds, I can take my husband’s hand rather than push him away. In five seconds, I can give my loyal furry friend an extra scratch between his ears. In a matter of mere moments I can truly make a difference for those around me and in the lives of those I love so much.

In just five seconds, we have the power to encourage or discourage. What are you doing with yours?

Follow this journey on Families Unbroken.

The Mighty is asking the following: Describe a moment you were met with negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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