2023-05-16 14:37:57
Allan-Herndon-Dudley syndrome (SAHD) affects one in 1 million people. This X-linked disease exclusively affects boys. It causes a heavy poly handicap. What does everyday life look like when you have this syndrome? And when it touches your child? We met Morgane, the mother of Nate, 3 years old, affected by this syndrome.
What are its symptoms?
There are very few doctors who know regarding this disease which causes a very heavy poly handicap. The main symptoms for Nate are: oral disorders, i.e. there is often weight loss, difficulty eating on his own, not much tone, at least at the level of head and trunk. In addition, he has hypertonia of the limbs and dystonia, ie poor coordination of movements.
We try to find lots of treatments, to relieve all these symptoms and make sure that he is generally comfortable. Nate is 3 years old. Finally, he has evolved very little on the motor and intellectual level since he was 3/4 months old. So he doesn’t talk, he doesn’t walk. He can’t sit. He still remained a small model, a little baby. He turns on his side but even turning on his stomach is complicated for him.
What therapeutic treatment is he receiving?
In recent years, we have intensified the rehabilitation sessions. He’s making progress. It’s really progress that is negligible. But little by little, he acquires very small things. I think that if we didn’t make all these efforts, it would regress.
But now, he still has a better head posture, a better tone. I think and hope that with a lot of work and rehabilitation sessions, he will be able to sit up, maybe even stand up. We are moving forward day by day. Hoping of course that he has the sweetest and longest possible life.
How does he communicate?
He smiles and laughs a lot. Conversely, when things go wrong, he is also very expressive. He cries, he can scream. He has little facial expressions. So, now, we get to know if it’s just an annoyance, a pain or something else.
Not a day goes by that he doesn’t smile and not a day goes by that he doesn’t laugh. This is also what keeps us going.
We are very fusional. He has a huge need for contact. So he is very often in our arms. He loves everything that is sensory, so massages. And finally, that’s our little daily pleasures.
How do you stay positive in difficult times?
With Nate it’s really been a roller coaster since birth. There are times when he is extremely well, times when he is extremely bad. It evolves and it even changes sometimes during the same day. We know it will pass.
Also, we learned to ask for help, which is not always easy. We are very well surrounded by our families, our loved ones. It’s a big chance. We also take turns a lot with the dad, we try to listen to each other and manage to keep each one’s little passions, their activities and even to keep time as a couple. That’s how we managed to organize our lives a little, to find a balance for everyone.
What message is close to your heart?
Often we do not realize that having a healthy child is a chance. But it’s true that when we are finally confronted with illness, hospitalizations, treatments, we realize that there is nothing more important than health. It’s precious to see your child evolve, walk, marvel at the world. Some parents may forget this. It’s a message that I want to convey by saying that you have to realize how lucky you are.
We have created an association called Nate’s Smile. We are present on Instagram, Facebook and we have a website. It is an association which aims to finance intensive courses, rehabilitation sessions, specialized equipment which are not covered by Social Security. There is also a whole section where we raise awareness. Our goal too, is really to help other children.
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