Marta and Daniel Walotka are loving parents of five-year-old triplets Lena, Pola and Nina, but the family’s lives were rocked when Lena and Nina were diagnosed with Battens Disease – a genetic condition of the nervous system that affects speech, movement, and is ultimately terminal. Marta tells us how Hospice is helping to care for the whole family.

“In Northern Ireland there are only two children with CLN2 type Batten Disease, and it’s Lena and Nina, nobody else. The world totally collapsed for us when they were diagnosed in 2021. It feels like it’s not true when you’ve got three kids and two of them are diagnosed with a very rare disease. It was a disaster, the worst day of our life.

“The triplets were born prematurely at 29 weeks. Lena was born first, followed by Pola and then Nina. We spent eight weeks in hospital with them but after that they were developing and meeting milestones perfectly.

“A couple of years ago we noticed that Lena and Nina’s movement, balance and speech weren’t right and then both girls started having seizures.

“COVID delayed all investigations into the girls' symptoms, including their MRI scan and the blood test for genetics. In December 2021, Lena and Nina were finally diagnosed with Batten Disease. It’s a degenerative condition affecting the nervous system and it’s terminal. There is no cure.

“Lena and Nina started receiving enzyme replacement therapy in Great Ormond Street Hospital, so we were exhausted flying to London every two weeks for the girls’ treatment while a metabolic team in the Royal Belfast Hospital for Sick Children (RBHSC) were being trained. Lena and Nina now attend RBHSC fortnightly for enzyme replacement therapy.

“Our community paediatrician helped set us up with speech or language therapists, a physio and occupational therapist. Then she mentioned about Hospice. We both thought ‘No, we don’t need that, not yet.’ But right now, it’s just ‘Okay, when are we next going!’

“The first visit with the girls to Hospice was in July 2022. From that day, always when we go there with the girls, they don’t want to leave! The girls love the soft play and one-to-one time with the nurses, which is so important.

“I said to Daniel, it’s like we are home, a very comfortable place with a homely feeling. It’s a beautiful space, and we can be there with them. Go to the soft play, go to the playground outside, sit and have coffee. And we know that they are with someone, but we are still there if they need us.

Marta adds: “It’s very helpful that we’ve also got the support of the Hospice’s social work team for our family. We know that if we are struggling, we can phone them for a chat. We also know we can count on the helpful nurses there, it’s a real partnership. Teamwork!

“The Hospice is important. As parents living and looking after sick children each day from their birth, you forget to look after yourself. We need that time to sit at home and take that time to relax a little bit. Hospice is very, very helpful for us as parents, as a couple.

“You need that time for yourself, but it’s also good for all three children. Because they are with us every day, I think they appreciate the time when they don’t have us. It’s giving them some freedom. In Hospice, it’s mostly a nurse spending one-to-one time with Nina and with Lena. Such individual attention is a rarity at home.

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