Kate’s 2 year old son, Arlo, has had an immensely challenging start to life.
Arlo had a normal birth however after mum Kate noticed he was blue, floppy and fragile looking he underwent blood tests and brain scans.
However, Kate and partner Ben were reassured Arlo was healthy. Problems began in January 2022, when they found out Arlo was deaf. He then began having flickering eye movements, and following an ECG and eye tests, it was revealed that Arlo was also blind.
“It was just horrific”, Kate said.
Finding out your baby is deaf and blind, and yet we still didn’t know the root cause of it all. I just wanted to know why he was having all of this bad luck, we just didn’t understand it.
Kate and Ben had their blood taken which revealed they had a PEX1 disorder gene. They were carriers of a disease called Zellweger, which is extremely rare, and affects 1 in 50,000 babies.
In May 2022 Arlo was diagnosed with Zellweger Spectrum Disorder, a life-limiting condition, as well as infantile spasms, hypersalivation, and blood clotting disorders. Arlo also suffers with seizures, has issues with his lungs and he has an enlarged liver, which requires regular scans checking their functionality.
He also has adrenal insufficiency, and is immunosuppressed, resulting in this little boy having to take 7 medications, 14 times a day. Kate said; “We were told that our child has this life-limiting condition, and we don’t know how long he’s going to live for. We came home and we were just trying to digest everything, we didn’t understand what was going to happen.”
Regular trips to Bristol Hospital then became the norm for the family, with Arlo seeing genetic and metabolic consultants. Arlo has now had almost 20 hospital admissions since being born.
Arlo wasn’t meeting milestones such as sitting up and supporting his own body weight and after finding out he had an unsafe swallow, he was fitted with an NG tube to assist with feeding, which proved to be a lifesaver.
Kate said: “In terms of coping, you just do. Waking up every day, you know your routine, but you’re never sure which way it’s going to go. You don’t know if you’re going to have a good day or you’re going to have a bad day.
“You know when you’re on stepping stones, you don’t know whether your foot is going to fall in the water, or if you’ll get safely onto the stone, that’s a bad analogy, but it’s a bit like that.
“It’s very difficult to say how you would cope with a disabled child, because you would just do anything for them. If you could take it away, you would. If there was a magic pill, you’d take it.
I cope because I have a support system, that’s the most important thing for us as a family. We have amazing grandparents that help, we have open access to the hospital, and we have Little Harbour.
Kate and Ben began visiting Little Harbour in August 2022, after being put in contact with the hospice by their speech and language therapist. They love coming to the hospice to make precious memories with Arlo, and his older brother Louie.
The family had a tough time in April 2022, when they thought Arlo was going to die after suffering from a big seizure in hospital. The family were visited by Sophie, one of the team from Little Harbour. .
“Sophie was like my guardian angel, it chokes me up when I think about it”, said Kate.
“I was at my lowest, and they (CHSW) just came and helped me. They gave me the biggest hug and bought me a cup of tea, and I was able to have a shower. They just bring this element of comfort, as they’re this familiar face that knows your child.”
“We had to discuss advanced care plans and wishes for Arlo, and I couldn’t breathe. I felt like I was suffocating but Sophie provided that reassurance, and just took over. She was the voice I couldn’t have in that moment. She just took all the worry from me.
“I am so grateful, I’d had no sleep, I hadn’t eaten or drank anything and my head was pounding, I just kept looking at my child thinking, please do not die.”
When Kate first visited Little Harbour, she wasn’t sure what to expect. She pictured an old, run down Victorian house, but was met with the opposite when she walked through the doors.
“I was so shocked at how clean and beautiful it was. It was so modern, and what I loved about it so much was that it wasn’t clinical. I found that the most comforting thing”, said Kate.
When Arlo dies, Kate wants him to return to Little Harbour’s Starborn room.
“I remember the first time I asked to see Starborn, I just needed to see the room. Every time I go to Little Harbour, I make the effort to go and see the room. Strangely it is a big comfort for me, but there is also the realisation that this is THE room.
“But mostly, it feels like a home from home, and that’s what I love about Little Harbour.”
Kate’s other son, Louie, also loves visiting the hospice. It can often be hard for Louie, as his brother Arlo requires a lot of attention. Louie enjoys playing with the other siblings, and gets lots of attention from the Sibling Team, who Kate describes as ‘amazing’. They help when Louie feels nervous or anxious.
Kate said, “It is just magical, what they do.
“They just offer something special there. It’s so lovely how the food is cooked for you, and everyone sits and eats together. As soon as you walk through the door, it’s like a huge sigh of relief. I know someone is going to help me look after Arlo, and help do his medicines. It is lovely for a few days, to not be worried, to get some sleep, and to have a break, and I love the way everyone is so respectful.
I’ve never known a place like Little Harbour before.