Guest post: "I've slowly accepted my son's life-limiting condition"
Geraldine Renton explains how her son changed her outlook and prompted her to raise awareness of Hunter syndrome
It's me Ethan
Posted on: Thu 19-May-16 11:58:36
(15 comments )
"Bring him home, love him… you won't have that long."
The doctor's words seemed to form cold iron chains which hung tightly around my neck. It was 2008 and he was giving us his diagnosis. "Rare. Genetic. Progressive. Regression. Terminal." Ethan, he told us, has Hunter syndrome.
I can still hear the doctor explaining that this was a rare genetic syndrome for which there was no cure. People living with (severe) Hunter syndrome are missing an enzyme - this affects their appearance, mental development, organ function and physical abilities. Every single part of the body and mind becomes damaged over time.
The treatment, Enzyme Replacement Therapy, would involve synthetic versions of the enzyme being infused into his body for three hours every week. It is indeed a miracle drug, but it would not be able to cure Ethan.
I had never known heartbreak until then. My heart had become glass and each of the doctor's words seem to create another crack until it was split into countless pieces.
That was 2008, and, for the first few years of Ethan's diagnosis, I convinced myself that he would somehow just be OK. It was a delusion - but it did help me get through the initial shock.
Back then, when people would ask me about my boys, I would never mention Hunter syndrome. I wasn't strong enough to explain. But gradually, as I slowly moved towards acceptance, something changed.
I stood on the sidelines of other families living their lives. I listened to parents speak about their child's abilities, syndromes, and conditions. I saw the pride they had in their child's accomplishments and their willingness to share their journeys with other families. I saw their strength.
Had there been enough awareness about Hunter Syndrome 10 or 15 years ago I would have known by looking at Ethan that he had it. Would that have made a difference? I believe so - Ethan would have been on treatment sooner and probably taking part in a current drug trial.
Slowly, as I accepted what was happening, those chains around my neck loosened. When people asked me about my boys, I began to divulge a little bit more. Sometimes people who asked me about my boys were just passing the time. At other times, I'd be in conversation with someone while outside a children's hospital ward. We would stand drinking our coffees, our foreheads all wrinkled, holding our phones so tightly. We just knew we were both standing on similar ground, no doubt waiting for that call - the call that tells us our children are back on the ward or the call that tells us we must meet them in the ICU.
It was while standing here, with this second group of parents, that I began to open up. I would tell them the reasons my forehead was as wrinkled as theirs, my eyes as red as theirs and my heart as shattered as theirs. Then we'd exchange stories, funny stories about the things we never thought we'd celebrate, or the things our children can do, or about that one time our child learned the 'F' word and continued to use it at every opportunity.
There is an unspoken bond between parents who have children with disabilities or life-limiting conditions - we simply 'get' it.
Now, when I am asked about my children , I don’t shy anyway from how different our lives are from the average family. I will engage with those who are interested in hearing about our life. If I am asked about Ethan, I tell people he is an amazing boy who really brought me into the world. The perspective he has given me is one which I think we could all use once in a while. Life is indeed for living.
So yes, I do now tell people about Ethan and I don't just sit and nod if they presume something which is incorrect. Does any parent? I want to raise awareness, and to explain. If someone is engaged enough to ask more questions about Ethan, I will explain Hunter syndrome as gently as I can. I often find these days that I am the one comforting the person who has just asked "what is Hunter Syndrome?" I am now strong enough - most of the time.
Had there been enough awareness about Hunter syndrome 10 or 15 years ago I would have known by looking at Ethan that he had it. Would that have made a difference? I believe so - Ethan would have been on treatment sooner and probably taking part in a current drug trial.
I raise awareness then, partly for me: that 21-year-old girl who felt no one cared; who was told over and over again that there was nothing 'wrong' with her son; who was told she was 'an over-anxious first time mother'. And I do it for other mothers too. I want them to know that they are not alone. It is comforting to know I am not either.
Ethan has just turned 14. He is living his life, filled with laughter , swear words, TV, teddies, hats, and of course a bit of wrestling thrown in. He is happy and he also has Hunter syndrome. Those chains will never leave - but I must live too. There will be plenty of time for tears. Right now we are all learning to live, love and laugh all over again.
By Geraldine Renton
What a heart breaking journey, and yet you have so much joy. Hats off to you & Ethan. Thank you for sharing and making others aware. Wishing your whole family much love and strength.
That was lovely thank you, you are so brave and he looks an amazing boy.
What a touching story, but one of indomitable strength. Thank you for sharing.
Thank you so much for sharing your story and I wish you and your beautiful son the very best xxx
I have a son with a genetic condition too. I was also told I was an over panicky mother . I knew something wasn't right but too many times I was brushed off. It makes me cross to this day ! Your post is very heartfelt and I feel the same way . I can only now 5 years later explain without crying .
I was told by a Gp that he was only ill because I wanted him to be ill. Do my sympathy, and support for all the loving you give and receive.
I still don't tell anyone. It's not fatal, but it's life-long & incurable.
I hope one day I'll tell people
I had my daughter when I was 21 too, she has undiagnosed condition which is just a list of diagnoses and I can relate very much to you Geraldine she's 16 now. I wish people had of told me to enjoy her more though. The worst of what we were told did sort of happen (special school, major surgery, bastard epilepsy) no one told me how much I would love her though, how happy she would make me, how because I was a young mum I could still be a bloody good one (I know you know what I mean) it's all ok isn't it? As long as you love one another? It's not easy, God it's not, but for me having her here is far more important than not having her here at all. Life is for living isn't it? X
Ps I'm very wrinkly for my age too
Oh and on my daughter's notes it says over anxious, young first time mum too
It makes me roll my eyes if only they knew
Thank you so much for reading ! You can follow Ethans story over on Facebook (It's Me Ethan) or on my website geraldinerenton.com
Thanks again so very much for taking the time to not only read but to comment ..means alot to me x
that made me laugh! yes we are all just trying to live . And what would young mums know anyway 😉 I hope your daughter has many more memories to make with you...thank you so much for reading, it means alot to me x
Thank you for posting, my son was very ill for the first year of his life, tubes, endless medications, ICU, infections etc. No diagnosis. He is ok now. But it has left an indelible mark on all of us, as a family.
I read your story and it is so beautifully imparted, and I understand every part of your journey. I wish you and Ethan every good wish for your journey through life.
Beautifully written.I have just come back from coffee with one of those second group of parents.It's so easy,you can laugh,you can cry and you don't have to explain.All the best to you and Ethan too x
Sadly nothing changes, 78 years ago my grandma was told to leave my dad in hospital and 'forget about him and have another baby' after he was diagnosed with a life limiting condition. She refused to, brought him home and fought every step of the way to give him the chances she wanted him to have. We are currently planing his 80th birthday party.