Arnoldas is six. He has cerebral palsy and epilepsy. Because of cerebral palsy he does not walk, cannot sit on his own and does not speak.
But he is neither a patient nor a victim. He is a boy who understands everything and works very hard every day.
How it began
The pregnancy went smoothly. Arnoldas is one of twins. The boys were born prematurely, at almost identical weight. After a head ultrasound the doctors warned that Arnoldas would most likely need serious rehabilitation. As parents, we hoped it was only excessive medical caution.
The problems started when Arnoldas developed increased muscle tone. The spasms affected the muscles of his mouth and he began to eat poorly. At five months old the epileptic seizures began. He no longer takes medication for them: his EEG was good two years in a row and the doctor withdrew it. The diagnosis remains.
At the same time the doctors mentioned a gastrostomy, a feeding tube into the stomach.
If they had insisted, I would have agreed. We could not find a serious specialist at that time, so I made the decision myself: to try speech therapy massage.
Arnoldas does not like his face being touched. So we did it little by little, every day. After a year he began to eat normally. Until then a single feeding took an hour, sometimes an hour and a half.
Now I know the choice was right. Back then I knew nothing.
We spent almost the whole first year of his life in hospitals and rehabilitation centres. Arnoldas’s twin brother Arturas grew up at home with his father during that time, barely seeing me. Two years later our third son Aleksas was born.
Two brothers, one DNA
Arturas and Arnoldas are identical twins. The same DNA, the same day. The difference between the brothers was created entirely by cerebral palsy.
Arturas loves his brother deeply: he hugs him, talks to him, protects him. Arnoldas answers him with his hands: yes or no. Arturas never leaves his brother when he cries.
Once at the seaside Arturas was looking for a stone with a hole in it. They say that if you find one, you may make a wish. His wish was one: that Arnoldas would start walking.
When we came with Arnoldas to the kindergarten to pick up Arturas, he immediately introduced his brother to his friends and said himself that Arnoldas does not walk. But there was neither sadness nor pity in those words.
There is almost no information
This is the thing that matters most to us.
There is a serious lack of information about what parents should do when they face cerebral palsy. We searched for everything ourselves, from the very beginning. Information does not come from institutions; in practice it is passed from one parent to another.
That is how it was with the gastrostomy, when I had to decide alone.
That is how it was with rehabilitation in Poland. We got there only because I met a mother in hospital whose daughter also has cerebral palsy. I dared to try only thanks to her.
And that is how it was with speech. At the „Olinek“ centre in Warsaw, Arnoldas learned to control the screen with his eyes and to choose pictures using special equipment. Such equipment costs around 11,000 euros and the state does not cover it. We applied to TPPC asking for an exception and received a refusal.
Then, again from other parents, we learned that an ordinary tablet with special software can be used for communication. In the end we found a solution for 930 euros. And we had been ready to pay eleven thousand.
What he can do today
Doctors keep emphasising that Arnoldas is an intelligent and promising child. Because of his increased muscle tone he can neither speak nor chew. But that does not mean he does not understand.
He has therapists he likes and therapists he does not, favourite cartoons and toys. He shows yes and no with his hands. And every year he can do more than the year before.
A year ago, during an exercise on the ball, spasticity would win: his body would tense and the movement would fail. Now Arnoldas sits up by himself. With help, but the movement is controlled by him, not by the spasticity.
This summer he ate pizza for the first time in his life. He chewed it in small pieces and did not spit it out, as he used to.
And recently we got a tablet with the communication programme „Grid 3“. On the screen there are a few large cells: yes, no, more, it hurts. Cerebral palsy took away his body’s ability to move, but it left his mind. Now we are looking for a way to hear that mind.
What a year costs
Arnoldas needs continuous rehabilitation and breaks are not possible. Cerebral palsy does not go away, and muscles forget what they have learned: after two weeks without sessions the body goes back.
We use every option the state provides, but for Arnoldas it is not enough.
- Private clinics in Vilnius („Neurocta“ and the Child Development Clinic): about 12,000 euros per year.
- The „Olinek“ centre in Warsaw: four intensive courses per year, one course including travel and accommodation about 4,200 euros.
- Leg orthoses from the Polish company „Ortopro“: 1,850 euros per year.
About 30,650 euros per year in total. The National Health Insurance Fund refunds part of the therapy cost of the Polish courses if there is a referral from a Lithuanian doctor, but not for every course. Travel and accommodation are never covered. So after the refund about 26,000 euros remain. Part of this is collected through the Lithuanian 1.2% income tax donation, part comes from larger foundations and from the people who support us. We keep all invoices and show them to anyone who asks.
His brother Arturas has no doubt. He knows that Arnoldas will walk. That day simply has not come yet, and his brother needs more time.
How you can help
Direct 1.2% of your income tax (for Lithuanian taxpayers). It costs you nothing, because it is part of tax you have already paid. The request can be submitted for five years at once, so it does not have to be repeated every year. Foundation code: 306291626.
Support by bank transfer. Recipient: Arnoldo labdaros ir paramos fondas. Account: LT26 7300 0101 7729 8807. Purpose: Support for Arnoldas’s rehabilitation.
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