Meet Freddie!

Freddie was born in 2010 and from day one he was unwell. We were told very early on after his birth that the doctors suspected he had a syndrome. They said he didn't look quite as they'd expect a newborn baby to look and he was struggling to thrive. They couldn't tell us what exactly was wrong with him but they did expect he would have a lot of health needs.

As predicted Freddie did grow up to have a lot of complex health needs. Lists and lists of problems. He couldn't feed properly so had a feeding tube in place, he couldn't walk, he couldn't talk, he had heart problems and spinal issues. He had sleep problems needing overnight ventilation, severe reflux, bowel issues, eyesight problems and recurrent

pancreatitis. Over the years the lists of problems grew and grew and Freddie was always in an out of hospital with some health condition. 

Freddie was six years old when he was offered a place at Little Harbour children’s hospice near St Austell. Despite all of his problems Freddie was always so happy; always laughing and being cheeky. His health felt relatively stable at this point; he had a lot going on and needed a lot of care but he was as well as he could be and he enjoyed all his visits to Little Harbour. Freddie’s face always lit up when we arrived, and he was quick to boss the staff around and tell them exactly what he wanted them to do …for a boy who can't talk, he is very good at getting everyone to do exactly what he wants! It was always such a welcome break for us as a family to visit the hospice.

To know Freddie was so well cared for while we got to relax and catch up on much-needed sleep was a lifeline for us. 

But 2020 was a particularly bad year for Freddie. As soon as we heard coronavirus had arrived in the UK we instantly took Freddie out of school and began to isolate him. We were worried for his health if he were to catch this virus. He already had such a huge list of health complaints we were terrified that he wouldn't be able to fight off the coronavirus. 

We managed to isolate for a week at home before Freddie began to become really unwell and needed admitting to hospital. He had been having some bad stomach pains that were causing him great distress. He would spend hours screaming in pain. In hospital his bowels were x-rayed which showed worrying distention in his large bowel. He was treated with various medication for constipation in the hope this would help. Over the next few

months Freddie was in and out of hospital almost daily, at times visiting the hospital twice a day as his pain with his stomach would get so bad. Various treatment options were used but to no real effect. Trying to navigate appropriate hospital care in the middle of a now pandemic was tough. Trying to keep Freddie safe from coronavirus while constantly visiting a hospital to treat his health needs was such a juggling act. 

By May Freddie's stomach issues got so bad he was blue lighted to our nearest children's hospital, three hours from home. He was treated for another bout of pancreatitis and more problems with his bowels. After three weeks he was discharged home, but only weeks later he was blue lighted back into hospital in a bad way. 

He was in severe pain and his bowels were concerning the doctors. On arrival to the children's hospital we were told Freddie's large bowel needed to be removed as it was in such a bad way. We hoped this would be the end of all the pain for Freddie but sadly things kept getting worse for him. After the operation Freddie went on to spend 12 weeks in hospital, having a lot of operations and procedures to try and make him better. It was a really tough and worrying few months. We finally were able to discharge Freddie in September. His care needs had greatly increased and instead of going home we were discharged into the arms of Little Harbour for a few days.

Despite the ongoing pandemic and the hospice having to restrict stays for families, we were wrapped in a great, big hospice hug and were able to relax, recharge and recover from the past few months.

It was a much-needed step down from a traumatic 12-week stay on a high dependency ward in hospital. Freddie’s care needs had grown so much it was quite overwhelming the amount of care needs he now had. It was reassuring to have the hospice staff around us for a few days before we fully took over Freddie's care at home.

Freddie managed a few weeks at home before again his health took a bad turn and he needed to be sent back to hospital. He had lost a lot of weight and was severely malnourished. His gut was really struggling to work properly and it was decided Freddie would need to be fed in a way that would totally bypass his gut. He would instead be fed into a vein in his heart. He had a Hickman line inserted and began on TPN (total parenteral nutrition) feeds. To be able to take Freddie home on this type of feed required weeks of training. Every feed has to be connected in a totally sterile way otherwise we risk Freddie getting sepsis and becoming very unwell. After seven long weeks we managed to discharge Freddie home from hospital just before Christmas. 

The whole time Freddie was unwell Little Harbour were in constant contact.

We had weekly phone calls and they even visited us in the hospital to sit and play with Freddie. Freddie’s two other siblings were never forgotten about and the hospice Sibling Team offered them such great care and support. The effect Freddie’s deteriorating health had on them was huge. They were left for months without being able to see their brother and their needs often had to be overlooked. Visits at home from the sibling team always put a smile on their faces.

Despite spending most of last year unwell, Freddie managed to raise more than £2,000 for Children’s Hospice South West. He is unable to walk unaided but absolutely loves being upright and spending time in his walking frame. So we decided it would be a good escape from the worries of Freddie’s health to give him a challenge to complete 26 laps of his garden in his walking frame. Despite having days of being upset and in pain, Freddie was always raring to go for a walk. Every time he saw his shoes ready to be put on his face would light up.

To decide to do a fundraising challenge in the middle of a pandemic when your child’s health is struggling was a big thing for us to take on but we would be so lost without Little Harbour. The support they have provided us over the years has been incredible and the feeling of knowing they are there for us through the good and bad is so reassuring. There were times last year when Freddie was unwell when I was so worried where his journey in life was going. We were given paperwork to fill out to detail our wishes if the worst should happen. But to know we had Little Harbour Children's Hospice by our side helped us so much to deal with our feelings and made us feel reassured that whatever should happen there is always a place for us. They are such a lifeline for us.

Freddie has managed three months now out of hospital! His care needs are very high and his health is a constant worry but he’s in a good place. After a long period of not being able to use his walking frame due to his ill health, it was lovely to see him back in it this week; his eyes lit up at the sight of it! He is planning his own Incredible Hike during the summer holidays and hoping to raise some more money for his happy little place, Little Harbour. 2020 was a tough year for Freddie, but he's ready to put his shoes back on and get back in his walking frame, stronger and braver than ever before.