16 June 2025
We last caught up with Jana, Robert and their sons Samuel, aged 5, and Freddie, aged 7, in 2022. At that time Samuel was at home recovering from a successful heart surgery but was finding feeding a challenge.
Fast forward to 2025 and Samuel has started school and his feeding has improved.
Samuel has had various feeding systems that have all had their specific issues, the latest is a MIC-KEY button which has an anti-reflux valve, which helps prevent stomach contents from leaking out of the tube, making feeding easier.
His main challenge now is sleeping, Jana says:
“There’s always something, at the moment, it’s sleeping problems. Samuel has been on melatonin since he was 18 months old to help him sleep but it doesn’t seem to be working as well anymore.”
Jana and Robert are also currently trying to motivate Samuel to be more independent, and it seems to be working, Jana says:
“Samuel is getting more vocal, engaging more at school and getting more explorative and confident. Samuel is now making choices for himself and is communicating those choices about where he wants to go and what he wants to do.”
Samuel has a Real Love for the Outdoors
Samuel has also had his first Botox injections in his calf and a cast fitted to relax his muscles as he couldn’t put his left foot down properly or bend his leg. If the casting doesn’t work, then he will need surgery to correct the issue. Hopefully the Botox injection and casting works as Samuel has developed a real love for the outdoors, Robert says:
“He's really enjoying parks at the moment, a lot more than he used to.”
We have been supporting the family since 2020 when Samuel was diagnosed with a chromosomal abnormality called Partial Trisomy 13 which can cause face, brain, heart and growth abnormalities. In Samuel it has caused global developmental delay and some hearing loss. Back in 2022 the family were accessing most of our services, respite stays, Specialist Care and Nursing, Music, Hydrotherapy, Art and Occupational Therapies, Family Activities, Specialist Play and their own dedicated Family Link Worker. Robert has now gone back to work, and both of the boys have gone into full-time education, so we’ve tailored our services to meet the family’s new circumstances.
New Addition to the Family
Before going back to work, Robert was the family’s main carer, now Jana is at home, cooking, cleaning, dropping off and picking up the boys from all their activities and looking after the latest member of the family. The new addition to the family is a six-month-old Border Collie puppy called Alfie who needs regular walks as an outlet for his boundless energy.
Samuel’s older brother Freddie also needs outlets for his energy, Jana says:
“Freddie is doing lots of martial arts and is doing really great. He goes to Karate, Jiu-Jitsu, Judo and kickboxing.”
Freddie has already attained a black and white belt in Judo and a yellow belt in Jiu Jitsu and if that’s not enough, he’s also asking for Robert and Jana to take him to swimming, football, tennis and badminton!
Supporting the Family All the Way
The family still attend family days and came to our recent ‘Wizard of Oz’ themed day where they got a very rare family portrait courtesy of our Volunteer Photographer. Robert says:
“Noah’s Ark has been great, especially the respite which is really helpful and gives you a chance to reset a bit. I really enjoy coming to The Ark and catching up with everyone and having a latte in a nice sunny space.”
Robert talks about the support the family receives from Noah’s Ark saying:
“The help you guys have provided has changed over time, it has adapted and grown, and you’ve supported us all the way through. You guys are really keeping pace with us.”
With kind thanks to Jana, Robert, Samuel and Freddie for sharing their story.
