Kara Torres-Kilgannon is the mother of the 9-year-old Sebastian who suffers from ataxia and leg spasticities of an unknown cause. Despite his daily struggles, he is a motivated young boy with many interests that dreams of being a doctor.
My 9-year-old son Sebastian is a caring, friendly, hard-working, intelligent, and sweet boy. Sebastian is a great friend and brother to his siblings- Thijs, Stella, and Martina. He likes all sports and he follows all Boston teams religiously as well as the English Football League. Sebastian has followed in my footsteps with his love of books, languages, and history. From a very young age, Sebastian has dreamed big and talked about being a doctor. He enjoys watching medical student YouTubers such as Faye Bate, Nasir Kharma, Shaun Andersen, and Rachel Southard. He enjoys reading medical books and studying anatomy flash cards.
Anyone looking and hearing about Sebastian would think that he has a great life and he has everything going for him, which he does, but he also lives with ataxia and leg spasticity of an unknown cause. Sebastian’s days involve school and multiple sessions of physical therapy, occupational therapy, speech therapy, and counseling. Our calendar is also full of appointments with various doctors at Boston Children’s Hospital – Neurology, Genetics, Urology, Ophthalmology, Orthopedics, Physical Medicine, and Rehabilitation just to mention a few.
Our family has been on a long 6-year medical journey trying to find an explanation for Sebastian’s low muscle tone, balance issues, and speech delays among other things. Sebastian has always been what the doctors refer to as “atypical” and a bit of a medical mystery for most of his life. Sebastian was only diagnosed with ataxia in October of 2020. It has not been an easy journey for our family. Our family is now part two research studies, which can sometimes help families like ours by looking at genomic sequencing to help with rare and undiagnosed conditions. The studies might yield no results and take many years, but it is worth a try, so we will just keep our fingers crossed.
Life is not easy and it can be a daily struggle. The past 18 months have been especially difficult for Sebastian and our family. His condition has gotten progressively worse. Sebastian tires easily. Sometimes he falls down from a standing position and he does not have the reflexes to save himself, so when he falls – he falls hard and it is scary for all of us. Sebastian also suffers from headaches, foot cramps, and backaches. Sebastian gets scared and worries about his medical condition because he does not understand why these things are happening to him and he cannot control it. Sebastian is one of those children, who reads the notes typed onto the computer during his medical appointments.
Over the past few months, Sebastian has not wanted to participate in therapy sessions. Sebastian would cry and say that he did not need any help because he was absolutely fine. I think that Sebastian’s frustration and anger mask his anxiety and fear, which he can often find hard to articulate. Sebastian confides in his big brother (who is only 11 years old) a lot and asks him tough questions like whether he was going to die from ataxia. He also recently asked his brother if he could live with him when he gets older. As a parent, those are hard things to hear because what 9 year old should be worrying about such things, but this is our life. Ataxia is one of the cards that we have been dealt with and we have no choice, but to live with it and support Sebastian as much as we can just like we would do with any of our other children.
As Sebastian has gotten older, he is more conscious of things and aware of his differences, which has been difficult especially when dealing with others. We have had to deal with family members saying inappropriate things, for example when Sebastian suffered nystagmus, a family member pointed a finger at him and said, “look straight and fix your eyes,” or telling people at a party that he was “special” and “something was wrong with him.” Children can also be very cruel. Sebastian has been called a “cripple” by so-called friends. He has been told that he speaks weird, he walks funny, there is something wrong with his eyes, he should go to a mental institute, and just kill himself. As you can imagine, Sebastian was broken and devastated by this. It will take him time to recover from this hurt, but we are doing everything we can to help Sebastian remember that what these children said is not true and there is nothing wrong with him, but words hurt and are not easily forgotten. I try to remind Sebastian of a quote that I heard years ago, which is “tough times never last, but tough people do.” You can only do the best that you can do, work hard, and think positively. I also remind him that there are lots of people, who love him, support him, and want only the best for him.
Do not get me wrong – everything is easier said than done. I am very good at putting up a façade of being a strong Mom and I can handle everything thrown at me, but I have moments of weakness. A few weeks ago, I spoke to one of Sebastian’s doctors about my concerns. It was one of those telephone calls, where you are relieved that you are not overreacting and the doctor confirms that they “see” what you are seeing. I should not have been surprised by what the doctor said, but it was still upsetting and devastating when he says words like “chronic,” “progressive,” and “aggressive.” The call ended with a list of medications to try and more doctors to see. I was simply overwhelmed. I immediately called my husband and told him, “… this is all too much. I cannot handle this…” He reminded me that I was strong and I could handle it. I would get through it and our family would get Sebastian through it too. I had a little cry, dried my tears, took a deep breath, and got on the phone with the hospital to make more appointments.
What do I find helpful when navigating this new life, which now includes ataxia? One thing I find helpful is doing research. I like to take part in ataxia conferences as well as educational conferences, which I find helpful. Knowledge is power. I like to be well informed and I like to be proactive. I like to be an active participant in all meetings whether medical or educational not only for Sebastian but all my children. My husband loves to tell people that he always looks forward to the part when they ask if anyone has any questions. He jokes that the lights go down, the spotlight turns on, the “music” begins, and I take out my legal pad to begin my “interrogation” and start firing away my questions. I used to be embarrassed when he said that and vehemently defended myself, but not anymore. I make no apologies for questioning people especially when their recommendations and/or decisions impact my children and my family. They may have MD or PhD after their names, but it does not mean they are “God” and know for certain what is best for my child and my family. Nothing is set in stone, so when they say there is only one option, I do my best to remind them that, in fact, there are several other alternatives, which can and need to be explored. I am their Mom, who sees them 24/7 and takes care of them, so my voice is very important and I take my role as advocate/Mama Bear very seriously.
I also find speaking to others very helpful. I have found four people that I can contact and just vent if I need to, which has been so great. It is important to find your “tribe” – a core group of people, who you can be “real” with and who in turn appreciate what you are going through and help you find your way.
It is also helpful to surround yourself with a medical team that you feel comfortable with and can trust. Sebastian’s doctors are proactive and very responsive. For example, we had a doctor call us at midnight to discuss an email that I sent about Sebastian’s condition and that doctor had Sebastian admitted to the hospital within 12 hours of that call for 2 days of extensive testing. Sebastian has an amazing medical team, who are very helpful and go above and beyond for him and our family. Remember to follow your gut and surround yourself with people that you trust.
It is also important to treat Sebastian the same as his siblings. It is important to Sebastian to be like everyone else, so we do our best to do that. For example, he is expected to help with household chores. He is expected to volunteer and be part of the community. Our family volunteers monthly at a food pantry and Sebastian likes to participate and helps as much as he can whether it be handing out food or putting pamphlets in bags. Our family also fosters cats and kittens for a local animal shelter, so he helps feed the cats and helps with socializing them, so they can find their forever homes.
My husband and I always remind Sebastian to dream big. He can accomplish anything that he sets his mind to and we will do everything in our power to support him. Recently, Sebastian and his brother came up with a challenge to honor the life and legacy of Capt. Sir Tom Moore. For those of who you are not familiar with this name, Capt. Sir Tom Moore was a British Army officer, who served in Burma and India during WWII. Captain Tom raised more than £30 million for the National Health Service by walking laps in his garden in the run-up to his 100th birthday during the COVID pandemic. My children called the fundraiser “Thijs and Sebastian’s Walk for Superheroes” and they challenged themselves to walk 20 miles in 30 days to raise money for a food pantry, animal rescue centers, and Boston Children’s Hospital. At the same time, the fundraiser was used to raise awareness for ataxia and anxiety. It was not an easy challenge especially for Sebastian, who finds it difficult to walk for long periods of time, but we encouraged him, walked with him, and the boys completed the challenge raising $9,375 for organizations that mean a lot to them and a lot of other people.
Finally, it is important to take care of yourself. Remember to take time for yourself. For me, I take time to have a massage, read a book, learn a new language or go for a walk. I need to be strong physically and emotionally, so I can be the best mom that I can be to my children. I remind myself that I can only do the best that I can do, which helps. I also remind myself when things get tough in my life that “the best is yet to come.”
Thank you for the opportunity to write you a bit about my family’s ataxia journey and thank you for reading it.
I wish you all the very best – good health, wealth, and much happiness!
Good luck. You got this!!
We would like thank Kara Torres-Kilgannon for sharing this personal and touching story about her son Sebastian.
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