Adel & Manel’s Story
My name is Adel Bounif. My daughter is 11 years old and is suffering from the Dravet syndrome. It is a rare genetic epileptic encephalopathy. The disease begins in infancy but is lifelong because there is no cure. Infants have normal development at the time the seizures begin. Yet as seizures continue, most children develop some level of developmental disability and other conditions associated with the syndrome. About 8 out of 10 people with this syndrome have a gene mutation that causes problems in the way that ion channels in the brain work. This mutation is most often not inherited from the parents, but is considered as de novo or "new" mutation in the child.
In order to make people aware about this rare disease, I have decided to be an advocate for the epilepsy community. I wrote a book called «Epilepsy the invisible pain » in order to raise awareness about epilepsy but also to make politicians and pharmaceutical labs aware in order to develop research and laboratory tests. I have also published a comic for children which gives me the opportunity to go to schools in order to educate children about epilepsy and the stigma linked to this condition.
Caregiving often calls us to lean into love we didn’t know possible. Caregiving gives you courage and strength despite chronic stress and restless sleep. It’s not the daily issues that break you down, it’s the way you carry it. Although your heart is broken, you try to push yourself every day for your child. Life is not a long stretch of a calm river but there’s always a rainbow after the rain. As a caregiver, her fight is my fight! I will never give up until we find a cure! I will fight for her but also for all the epileptic people feeling alone and isolated.
Manel was a baby when she had her first seizure at 8 months. The seizure lasted nearly one hour. At first, doctors didn’t say that it was epilepsy but one month later, she had another seizure and then two more seizures two weeks after. After that, she had many seizures each day and then her parents knew something was going wrong. After many emergency room visits, hospital admissions, EEG’s, blood tests and many medication, Manel was officially diagnosed with Dravet Syndrome, a rare and severe form of epilepsy with a mutation in the SCN1A gene. This mutation is most often not inherited from the parents but is considered as «de novo » which means that the mutation happens randomly.
Manel has developmental delays, intellectual disability, language delays, movement and balance issues and mood disorders. Unfortunately, there is no cure. Because of her delays, Manel couldn’t stay longer in a classical school because the gap with the other children was too large. Furthermore, the teachers were not trained to first aid medical rescue and there was also a lack of specialised assistants for disabled children. This is the reason why her parents registered their daughter in a specialised center for disabled children.
Manel’s dad needed to share his story in order to express his sorrow and his pain. Words and rhymes came naturally to his mind. This was obvious that poetry would be his survival weapon. This was also the start of a long struggle to raise awareness among the media, the government and the pharmaceutical labs in order to develop research so that the disease could be diagnosed at an early stage. For many people, poetry might be trivial. But for Adel, this is a survival weapon. A different way to speak about sickness with light, positive and soothing words, rather than medical words that can be difficult to understand. Adel’s mother tongue is French but writing in English could carry his poems across the world. In order to raise awareness about epilepsy, Adel published a book about his daughter’s journey. Here is one of his poem called «Message to my daughter » that he would like to share with us:
Message to my daughter
My baby girl, if only you knew,
All the things I'm going through,
All the things I'm doing for you,
To strive against your health issue.
I wish you could talk someday.
I wish you could understand what I say.
I wish your troubles would fade away.
I wish I could fix your language delay.
When we communicate with the eyes,
There's no feeling you can disguise.
When I look at you, there are no lies.
This is how we strenghten our special ties.
God does not do things by chance.
In life, nothing happens by coincidence.
God gave me a mission of high importance.
He helps me with his blessing and guidance.
You are the reason why I'm living.
You are the reason why I'm smiling.
You take my hand when I'm crying.
You give me the strength to keep on moving.
You are my sunshine, my ray of light.
Without you, my world would fall apart.
You brought joy into my heart.
You turned my despair into art.
I will never stop fighting for my daughter.
I will never give up, that's for sure !
I will do anything to keep you in my future.
I will travel around the world to find you a cure.
A cure would mean so much for Manel’s parents. Brain surgery is useless for Dravet Syndrome but the gene therapy would be a miracle that could treat the disease by correcting the underlying gene problem. Unfortunately, nobody knows when this medical approach will be applied to human beings. Manel is now 11 years old. Several years before, her dad didn’t know that epilepsy would change his life! He didn’t know that he would be able to visit schools in order to raise awareness about epilepsy and to educate them to invisible disease. Thanks to his daughter’s sickness, he became a better man. Although life is still difficult every day, he is thankful for this «gift » which made him stronger than yesterday. »
The courage of those living with epilepsy,
inspires us and fuels our journey.
Your gift will help us to continue on the road toward an epilepsy cure.