Arielle needs your help
Arielle, 4, was born healthy. At the age of 3 months, she began to lose consciousness every few minutes. Her parents rushed her to the hospital. Tests revealed that Arielle had been born with a structural deficiency in the brain – cortical dysplasia. This led to West's Syndrome, which is a rare disease causing severe convulsions, gradual cognitive and developmental deterioration, motor problems and mental retardation.
To donate to Arielle online
A Letter from Arielle's Mother, Limor:
I look at Estelle, Arielle's older sister… good-looking, tall, loves to read, full of unstoppable creativity and very talented. We dreamed the dreams of parents… we 'competed' against our friends to see whose kid would turn over first, who would say the first word and who would walk the first steps…
When Danielle joined the family, we progressed from being a couple with a child to being a real family – one that eats together, looks good in photos… like we did when we were kids.
When Arielle was born, the family picture was complete. During the first three months of her life, she developed wonderfully – we were so proud. She learned to roll over quickly, to smile right away, grabbed things with quick reactions… it seemed she had a lot to make up for! Even today, she seems to swallow the whole world with that great big smile all over her face. It's difficult to keep up with her!
Soon after Arielle was born, two more grandchildren were born to my parents, but now our family gatherings are much more painful for them, for my brother and for us. The gap in Arielle's development makes it very difficult…
It all happened so suddenly, with no prior warning. We woke up one Friday morning and sent Estelle and Danielle to preschool as usual, but a quick "good morning" glance at Arielle revealed something strange. We didn't know then what was happening – we asked each other if we'd noticed it before… we had no answers, and then even before we understood what was going on... again! – a glassy-eyed stare, no reactions, breathing stopped, hands flaying up and down… we tried to revive her, but to no avail… for a whole, eternal minute… we called a doctor… she came back to herself… and then again!
17 days later, we left Schneider Hospital with a long-worded diagnosis. It wasn't until we started searching the Internet that we were able to remember the names and what they'd actually told us.
We took a pile of prescriptions to the local pharmacy and they explained to us, "half of this pill in the morning; half in the afternoon and a whole one at night. One and half doses of this one in the morning; another one and a half at night. Add a quarter of a pill every two days. This third one here, give her one in the morning after breakfast, and the fourth one start with one in the morning and one in the evening, adding one more every week… do you need a pill cutter? How old is the child? How will you give her the tablets?"
So much to remember and all for a 3.5-month-old baby! A child that suddenly had become dependent on so much medicine. We had no answers for the pharmacist, who stressed the importance of keeping to the schedule. "If not," she warned us as we left, "your baby's situation could get worse fast."
We left carrying two full bags of drugs and accessories. There, for the first time, we came face to face with the economic reality of our new situation, which was only to grow worse as the years went by. But of course, we decided to take everything we could then – anything that could give Arielle a chance of getting better.
Over the next few months, we tried to keep up with the pace of all the information and medical treatments. It was decided to move Arielle on to especially high doses of steroids – she became very bloated, her immune system became weak and she was always ill. We spent most of her first year of life in the hospital…
Alongside our now-collapsed vision of parenthood, we had to keep working and being Mom and Dad to Estelle and Danielle as well. The enormous costs of the drugs and the treatment did not allow us to raise our heads above water for a moment…
But then, spring arrived and with it an improvement in Arielle's situation, and our morale got better too. We understood early on that optimism is not a choice. It's an obligation. We also understood that it was us who knew Arielle the best.
And so we discovered awesome amounts of strength and energy that had been locked up inside us. We became the initiators in everything concerning Arielle's treatment options. And we're still full of passion and energy today.
Slowly, we were able to lower her steroid dosage and Arielle became Arielle again. We were able to spend whole days away from the hospital!
Arielle learned to walk! And as far as we were concerned, she had begun a new journey. Just by looking at this girl – who a few months earlier couldn't move her legs or raise her head – we knew that Arielle had abilities and energies all of her own.
But this optimism didn't last long. We were noticing that she was falling a lot and bumping into walls. Again, no prior warning, and we were back at the hospital for tests…
Which this time left her very little chance…
It was back to steroids, and now we had to designate a sterilized room at home for her. That didn't really help because we were once again almost living in the hospital.
After nine months of treatment, there was another respite period, but it was clear that we were on a mission to save Arielle's little life….
We found ourselves in Toronto. They'd been testing in advance of the operation for almost a year – a year full of fear and full of major medical treatment. The hardest part was the thought that we wouldn't be able to get Arielle to the operation, either due to lack of funds or because she wasn't suitable. She really was too young for such an extensive operation…
Thankfully, after unlimited effort, we arrived in Toronto and Arielle had the operation. The complex process was accompanied by some very powerful feelings. On the one hand, tremendous joy that we'd made it in time for this one chance we had to save her life… but on the other, trepidation. Great anxiety…
The operation was a success and we returned to Israel exhausted but happy.
Not for long…
Arielle still suffers from severe convulsions every day, sometimes even dozens a day. Her immune system is also still not back to normal functioning and she's always ill with something. That means we usually have to go into hospital to cure whatever she has and her daily drugs dosage is an ever-changing combination of five different drugs.
However, this too isn't doing the trick and we have reached another crossroads. Here too I must mention Dr. Kaviti, who is faithfully treating Arielle with great love and professionalism. This latest juncture allows us to choose a number of treatment options, most of which demand massive fundraising and recharging our own strength.
On a developmental level, Arielle is functioning like an 18-month-old child. She is not independent at all, has no sense of judgment and can easily endanger herself and those around her…She suffers from a lack of balance when she walks, she can't see properly, she still doesn't answer her name and she doesn't speak, apart from finishing certain syllables of familiar words.
The complexities of both her developmental and medical treatment leave us never a dull moment, and we have long been unable to maintain the monthly expenses we need for all this care.
Every day we meet people who ask how Arielle is. Of course, most of these kind of situations do not allow for a true answer, because we know it must sound better than it actually is and also because we're often trying to give ourselves a break and deal with "normal problems…"
Anyway, the thought of having to cut some of the treatment is bothering us all the time…
Nevertheless, after another meeting with Yael at the bank (who is really doing her best) it seems we won't have a choice… unless we can find additional sources of funds. We have chosen not to give up.
As long as Arielle has not given up, neither are we. She deserves it.
Everyone can see that the personal treatment she's getting is improving her abilities. And as for us, every little step forward is an awesome achievement! Every small progression in basic skills is another chance for a better future…
Thank you,
Limor Akta
Arielle's mother
To donate to Arielle online
"Hope" –
A CD we've produced to raise money for Arielle Akta
As musicians, we can but offer the sounds we make; sounds we have put together to make this CD called "Hope."
The hope that we owe little Arielle.
We ask you to help us by buying this CD for 50 shekels (approx. $14), and all proceeds will go to fund Arielle's medical and paramedical treatments.
You can buy it at "The Third Ear" in Ra'anana, or direct from us, the Akta Family – 052-8197174, limor.akta@gmail.com. |
