He is 26 years old now, our boy S. I have just been looking back through a collection of his childhood photos and there are so many of him wearing his bright beaming smile and doing the things that boys like to do - he never let his disability hold him back. He tells me he remembers a happy childhood, not one of trials and tribulations. By the time he was 20, he had had at least 20 operations. Most of his childhood was spent with his right leg in plaster, splint, or ilizerof frame. Some in a wheelchair. We worked hard to give him a 'normal' childhood, we convinced the school that he didn't need to be kept in at playtime everyday for his own protection. There are so many stories I could tell, so many battles fought.
Today, he continues to cope with a malformed right tibia and foot, scoliosis, glioma in the brain, small tumours growing on his body, a large tumour, and more recently has added epilepsy to the series of 'complications' that can come with nf.
Why am I telling you all of this?
Because I am so proud of him. And of his brother - who again and again had to take second place through his own childhood.
And because 17 May was World Neurofibromatosis Awareness day.
And because most people have never heard of Nf, even though it affects 1 in 25,000 people. Nf is caused by a fault on chromosome 17. The tumour suppressor in the genetic makeup is at fault.
And because these things are often hidden. Who would look at the photo above and have a clue that these two had so much to deal with in their young lives?
Thanks for reading. If you want to find out more about the condition, then Nerve Tumours UK are doing a really good job at trying to raise the profile - and I just wanted to do my bit to help them. https://nervetumours.org.uk/
oh my. three cheers for these two fine young men. and for their wonderful parents. i guess you have found a way through the difficult times together, and how fabulous that s has had a happy childhood - hope you and mr h are proud of that also :)
Thank you Helen for sharing your story with such moving words. Having been a pediatrician for almost 40 years I had the occasion to meet many children with NF and I can tell you what you already know: that the big difference in these children ‘a quality of life is made by their families. Strong, positive, determined and loving parents(and siblings) can make their children live, like your boy did, a normal, happy childhood. And then a productive, serene adulthood. Hiding their own pain. And it’s great that you pubicized the 17 of May. Research will do miracles to treat the disease or at least to improve its burden. A big hug to you and your wonderful family
What a heartwarming story and you must be very proud of both your sons. Such bravery in one so young. I will have a look at the link because I have to admit that I know nothing about nf
It takes a very special family to navigate through the times you've experienced Helen. It must have been hard to stand back when he was younger. Thank you for sharing your story.
@moonmtn thank you Kahsia for reading it. @kali66 you are right Kali. But motherhood is hard in any case! @pistache thank you Clare. Yes, I am really pleased that he can remember the good bits and not just the tough parts. @fbailey thanks for reading and learning a little about nf. @onewing thank you. your comments much appreciated @ethelperry thank you Ethel. Don't we all have our challenging journeys, but sharing something of them is helpful. @caterina such lovely and thoughtful words, which are much appreciated Caterina. Through meeting other parents going through similar surgeries, we became acutely aware of the difference that good family support was going to make in the outcome. @shannejw thanks Shanne - I know you too are doing your own work in achieving the most for your daughter. @kjarn Thanks Kathy. We did our best but always wanted to be able to do more - for both our boys. @rosiekind Thank you Rosie. Ofcourse S would tell you that he doesn't feel brave at all (but I know that he is!) @flowerfairyann thanks for coming back to read this Ann - much appreciated.
@kali66 you are right Kali. But motherhood is hard in any case! @pistache thank you Clare. Yes, I am really pleased that he can remember the good bits and not just the tough parts.
@fbailey thanks for reading and learning a little about nf. @onewing thank you. your comments much appreciated @ethelperry thank you Ethel. Don't we all have our challenging journeys, but sharing something of them is helpful.
@caterina such lovely and thoughtful words, which are much appreciated Caterina. Through meeting other parents going through similar surgeries, we became acutely aware of the difference that good family support was going to make in the outcome.
@shannejw thanks Shanne - I know you too are doing your own work in achieving the most for your daughter.
@kjarn Thanks Kathy. We did our best but always wanted to be able to do more - for both our boys.
@rosiekind Thank you Rosie. Ofcourse S would tell you that he doesn't feel brave at all (but I know that he is!)
@flowerfairyann thanks for coming back to read this Ann - much appreciated.