Personal stories

anael2This hell is my life

Anaël left us in January 2010. A few months ago, her mum Géraldyn gave us this poignant account of her daughter’s illness and her daily living hell.

Anaël was 7 years old with blond hair and the face of angel. She looked like a little doll. She suffered from Alexander disease, a very serious form of leukodystrophy. She had no respite from the illness from the day it declared itself but retained her gentle look and cheeky pout.

Her mum Géraldyn had dreamt that her daughter would have a normal little girl’s life so she threw herself into the fight against this terrible disease. Anaël’s illness had worsened but she had kept smiling, particularly when her little sister Jéléna was born in perfect health. Today, Géraldyn talks about her intense and infinite love for her two little daughters.

 

When Anaël was born, I was a mother overcome with joy at having my first baby and discovered immediate intense love. I was brimming over with plans and wanted to share everything with my daughter – girls’ evenings, shopping, holidays, shows… I even changed jobs so that my hours fitted in with the crèche and to spend as much time as possible with my “Nana”. She was a lovely smiley baby and was unbelievably expressive.

Then on April the 5th 2003 when she was 13 months old, Anaël had a really bad convulsion when she woke up. I didn’t know what was happening. The firemen came and I could tell they were really worried by the way they looked at my daughter. They told me they were not qualified to stop the convulsions and called an ambulance but the ambulance crew couldn’t do anything to help either. Finally the Paediatric Emergency Service came. I just stood there speechless and in tears, staring at my daughter with about fifteen helpless emergency staff around her. After two hours, they finally managed to stop the convulsions.

Anaël was taken to hospital and underwent loads of tests for a week. I felt completely helpless. I couldn’t understand a word of what the doctors were telling me, they used what seemed all the wrong terms, talking about a degenerative neurological disorder and listing all the problems involved without mentioning the name of the illness. When I got back home, I found the word “leukodystrophy” written on her Personal Child Health Record. That was when I realized this was very serious. All I wanted to do was somehow put her back in my stomach. I was devastated, I felt like I had given death to my daughter. How could I go on living as if nothing had happened? How could I explain to her that she’d never be able to talk or walk and that gradually she would lose the few abilities she’d managed to acquire?

We started to live from day to day. I didn’t want to hear a thing about the illness. I didn’t ask a single question about the future. I just satisfied myself with the present moment and whatever Anaël could do. She was my child and I wanted to give her the same life as any little girl. Our life was normal until she was three and a half. Anaël attended the crèche. She got around on all fours and could stand with support.

I quickly gave up on the idea of her being like other children. With every bout of convulsions an acquired stage of development is lost and you can’t get it back. It began with the stiffness of her body. After each bout, there are things she will never be able to do again and you have to adapt to that all over again. Each time I wonder how I can replace what’s been lost. I had thousands of plans for Anaël. I wanted to give her everything – to introduce her to music, sport, music classes, the best school but that’s all over now. And above all to give her time, to always be there for her, to share in all she did.

Life became difficult because there is no respite from the illness. It spares you absolutely nothing. Anaël lost all her capacities at the end of 2008. Her body can’t move any more. During that period, we spent more time at hospital than at home. Luckily her little sister Jéléna arrived on October 24th 2008. I had wanted to be a mum again to prove to myself that I was capable of giving birth to a child in good health.

This has been a source of life. Jéléna stimulates both Anaël and me. Her arrival made up for the progression of the illness. It’s magic how close my daughters are. I’d been really scared that Anaël would feel neglected because of the arrival of her sister and conversely that Jéléna wouldn’t find her place between Anaël and me. But Jéléna asserted herself straight away. She is aware of the illness and adapts to her sister. The three of us share everything, good times and bad.

Since then, Anaël has been better, I hear them gurgling away, I look at them and I admire them. When someone is handicapped, it creates something intense. I’m extremely proud of my daughters, especially Anaël. Parents normally teach their children about life. In my case, my daughter has taught me about life because of her courage and determination. Anaël never complains. She gave me the most wonderful present – the only word she can say is “mummy”. Our relationship is deep, intense and fusional. We simply live at 200,000 mph because time passes so quickly. We tell ourselves that maybe tomorrow we won’t be able to any more.

Today I am aware of the end and I take everything I can from every single moment. I know now that the fight goes on for “Nana” and that it’ll go on afterwards for the other children. This living hell is my life and it’s become my struggle.

 

Even if it’s too late for Julien

 “Hang on” wrote Véronique with all the force of a mother who refuses to give up. For the last 13 years, this mum has been fighting for her son against a terrible illness for which there is still no cure, adrenoleukodystrophy. Julien is 20 now. He is completely paralyzed, has been unable to speak since he was ten and can no longer see. Véronique and her husband Alain know that their son will never be cured but still each passing day is like a victory for the whole family. It represents a moment spent together with Kyllian, the little brother who was adopted 3 years ago. Véronique protects her family and the love they share, a love which allows her to make plans and carry on for Julien’s sake. Here Véronique tells us her story, the story of the men in her life.

 

gallayJulien was born on March the 10th 1989. He was a lovely little boy in perfect health, he was touching and really affectionate. We used to play with him a lot, take him for walks and go on holiday to the seaside. We were happy. He used to say that he would be a policeman or a fireman when he grew up and then later that he’d help his dad in the shop. He was going to marry Emmanuelle who he’d known since nursery school, he’d have a job, children and a house…

But then in July 1996, Julien’s nanny told us he had a slight problem with his sight. During our holidays in August we noticed the same thing. Julien had started reading and writing very early and in September he was doing very well at primary school but he had trouble seeing the blackboard. We got an appointment at the opticians thinking that Julien was short-sighted like both of us. But after two appointments, the optician told us that there was nothing wrong with Julien’s eyes and that the problem was elsewhere, behind his eyes in. At the same time his handwriting was getting worse. His teacher was worrying because he couldn’t read properly any more. We made an appointment to see a neuropediatrician in Rouen. After four appointments, she made her diagnosis, Julien had leukodystrophy. She just told us it was a very serious illness and advised us to take him to the Saint-Vincent-de-Paul Hospital in Paris.

During the first year of the illness, he stayed the same apart from his sight deteriorating. At school, he needed a specialist teacher sitting next to him three times a week. He had problems accepting my help to go up stairs or cross the road. He used to shout angrily at me – “I’m not blind!” Little by little, he started having pain in his legs then he started getting stiff, having falls and being totally exhausted. Then came the moment when he asked unprompted for a wheelchair to go out. His school friends took turns pushing his wheelchair with kindness and enthusiasm. Unfortunately leukodystrophy gets worse over the years. My God, it’s so difficult to watch your own child, who was in perfect health at the age of 7, deteriorate, regress and become diminished day after day without being able to do a single thing to treat him.

In 1999 Julien’s suffering and our own moved up a level when he had a gastronomy button put in to help him eat and above all to give him the strength to resist this dreadful illness which just carried on getting worse. A year later, the nightmare got worse with paralysis of the limbs, inability to speak, bouts of convulsions, breathing difficulties caused by bad scoliosis and so on. Despite it all, my husband and I carried on fighting with Julien every day to help him live as well as possible with his handicap. Daily life is really hard to deal with. We wash him, look after everything for him, dress him, and give him his medication. That same year, Julien started going to a new centre. He leaves the house at 8 a.m. and comes back at about 5 in the afternoon the same as me so I then take over looking after him. You have to look after him the whole time. You need to check if he needs oxygen, deal with his convulsions, hydrate him and get up in the night when he moans, coughs, cries or has convulsions.

We are physically and morally exhausted but we have to hang on somehow and give Julien as much comfort and love as we can. He has good hearing, understands everything and he still has his lovely smile. He communicates with his face which is really expressive. If he’s in pain, he makes faces, moans and cries. If he’s sad, he cries silently. Whenever it’s possible, Julien does the same things as us. These moments are extremely important for us. Even if Julien is fed using a pump, he is always with us in the kitchen at mealtimes. He loves the smell of food and the sound of saucepans! We always share these moments together.

 

We hadn’t imagined we would have just one child.

Three years after Julien was born, we tried for another baby but unfortunately without success. At the same time as we decided to get medical help conceiving, Julien became ill which was total hell. I carry the illness and doctors told me there was a two in one chance another child would have the same illness as Julien. It’s appalling! The stakes are too high. We still had so much love to give and share. Even though our daily life was really tough, we launched ourselves into the adventure of adoption and chose to adopt an older child bearing in mind Julien’s and our ages.

Finally the miracle happened: Kyllian, 10 years old, was given to us in December 2006, our most wonderful Christmas present since Julien was born. This brought a whole new source of life back to the house with real moments of happiness, things we had forgotten since Julien became ill like hearing “mummy”, “daddy”, “I love you”, taking Kyllian by the hand, hearing him laugh, watching him run and play, starting bringing a child up again at almost the same point we’d stopped. I love doing his homework with him, I’d only had two years to do that with Julien. It really is wonderful. Alain was happy to fully play his role of dad again – football, cycling, roller-skating, play fights, going for walks.

Kyllian gradually came to understand Julien’s illness. He asked us lots of questions. The day after he arrived, he went to see Julien in his bedroom. It really affected him, he was very attentive. He asked about the pump, the oxygen, the medication… They gradually got used to each other. Kyllian just truly sees Julien as his brother, full stop. Of course Julien will never really fulfil the role of big brother. Kyllian accepts Julien and loves him just as his is. Julien is really happy to have a little brother at last. Kyllian strokes his face and his hands, plays him music, tells him stories, talks about his day at school. He protects him in his own way.

 

We are a real family.

It was difficult when Julien turned 20 on March the 10th. Even if we’ve lived from day to day for the last twelve and a half years, we still carry on making plans. Dealing with Julien’s serious illness has left us with the courage to bring up and love another child. It’s not easy but it has also reinforced our love as a couple and we were already very close despite the ordeal of this illness. It might sound selfish and hard to understand but we want Julien to live for a long time as long as his suffering doesn’t worsen.

Even if it’s too late to save Julien, we know that there are great leaps forward in research. So we carry on fighting with ELA for all the other children, so that one day this illness can be treated and other families will be spared all we’ve been through.”

Véronique Gallay, Le Trait (France)

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