“I am afraid of nothing, except winter,” Ivan’s mother says. In winter, the temperature can drop to minus 20 degrees. We are standing in a cramped, one-room apartment in the centre of Odesa. Ivan is 12. He has severe cerebral palsy due to birth asphyxia. He needs home oxygen – and a suction machine in case he starts choking. Because of power cuts, the oxygen and suction machines rely on a small generator.
Ivan’s younger brother usually sleeps in the bed next to him – except he is staying with relatives because of the drone attacks; he is nine. The parents sleep in a makeshift loft. Ivan needs round-the-clock care. “My husband is the nurse, and I am the doctor,” his mother says.
The apartment is on the second floor. There is no lift. The stairwell is poorly lit and damp, with rusting pipes and exposed wires. The bathroom and toilets for the apartment block are in the basement. It’s like a scene from Christy Brown’s My Left Foot – except Ivan cannot move a finger or a toe.
I am with businessman and former Munster rugby player Shane Leahy. Leahy’s organisation One4Humanity (O4H) helps to fund the Key to the Future – a project set up by mothers of children with special needs and disabilities to provide support for more than 400 children and their families in the Odesa region.
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Although O4H has supplied 16 fully equipped, mobile hospital units to Ukraine since the war began (and is transporting its first unit to Gaza), Leahy says this project is very close to his heart. Leahy, who has brought special foodstuffs and continence pads for Ivan, promises to get a better generator.
Earlier in the afternoon, we visited Maxim and his mother. Maxim is nine. He has severe cerebral palsy due to a head injury. His mother shows us a photograph of Maxim when he was four – just before the accident; tears well up in her eyes. Maxim is wearing a baseball cap and has a ball under his arm. Now Maxim has a tracheostomy; his mother feeds him with a bottle and teat; sometimes she uses a tube. The apartment is on the third floor. Again, there is no lift. When I ask her what she does when the air raid siren goes off, she says, “We stay. We wait. We pray.”
We started the morning with a visit to a day centre run by the Key to the Future project. It is situated in a multistorey building. In Soviet times, it was a hydrology research unit. Only part of the building has electricity; the lift only works between some of the floors.
The centre caters for 24 children, between the ages of six and 18. It has a neurodiversity room, a kitchen (to teach self-sufficiency skills), a gym, a speech therapy room, a pottery workshop and a bomb shelter.
Anna Kolesnychenko is director of the Key to the Future. “I am the director in the morning and the cleaner in the afternoon,” she explains. Volunteers staff the centre; all are mothers of children who have special needs or disabilities.
The most common diagnoses among the children who attend the centre are cerebral palsy, autism and genetic disorders.
O4H helps with the running costs of the centre, which are about €800 per month, increasing to €1,000 during the winter. The women also collect plastic bottle tops for recycling. To get paid, the tops need to be sorted by colour. In the yard there are stacks of plastic bags bursting with bottle tops waiting to be sorted by hand.
Refurbishments are under way to make more rooms available to accommodate up to 60 children and to increase the range of on-site specialised services. There are also plans to expand domiciliary support for more severely affected children. At present this service is provided by Lyudmyla, a volunteer mother of a child with a severe disability – but there is a need for professional training and support.
“There are two types of education. At first, you learn from your child; then, you must study,” Helena says. She has a higher diploma in speech therapy; her first teacher was her own child, now she volunteers her expertise.
“Although there has been a significant reform of primary care – there’s very little for those with special needs or chronic disabilities,” a Ukrainian doctor explains. “Everything has been made a million times worse by the war – so, we have to do it for ourselves” a mother adds. Some of the women have husbands and partners serving in the army – including on the frontline.
Overcoming incredible odds is nothing new for Ukrainians; neither is courage.
On social media, these mothers refer to themselves as “Unbroken Women”. They deserve our support – because that is what they truly are.
Dr Lyudmyla Zakharchenko, a Ukrainian consultant paediatrician living in Ireland, acted as the interpreter on the team
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