Milo

Milo was diagnosed with x-linked severe combined immunodeficiency in June 2018 at 4months old after suffering with breathing difficulties for around 6 weeks which gradually became worse. We were told that he couldn’t be treated for his condition in our local hospital (Hull Royal Infirmary) and that we would have to come to Newcastle, this made us anxious as our local doctors couldn’t give us any information on the treatment he’d undertake as they had not come across the condition before.

Upon arriving we were immediately put at ease that Ward 3 was the right place for him to be, all the staff were brilliant and the consultants made us feel extremely reassured about the path ahead for Milo. Initially the hand wash routine was a little daunting but this soon becomes part of your daily routine without even thinking. Due to the sudden admission into hospital we spent around 5 weeks on the ward before his treatment could begin, Dad was found to be a suitable stem cell donor and carried out his part of the donation at the Freeman hospital in Newcastle.

While on the ward mum stayed in the room and dad was able to get a room across the hospital site which was provided by The Sick Children's Trust and was a godsend for us to keep our little family together during the whole process.

During our stay on the ward Milo enjoyed his sessions with the Bubble Foundation Play Team, they made a real effort to tailor sessions to Milo’s specific needs eg. Baby Sensory sessions. These sessions also gave a chance for mum and dad to do something as small as sit and eat lunch together in the family room. Having a TV in his room with SKY tv made a huge difference for both Milo and us as parents, simply being able to watch something that you would if you were at home made you forget that you were in a hospital.

Luckily for Milo thanks to the dedication of the team on ward 3 his treatment went as well as could be expected, from his conditioning pre transplant which consisted of a course of chemotherapy, to the grafting process post transplant. The team on the ward let us know every step of the way what to expect and what we could do to make him as comfortable as possible throughout.

After the transplant one particularly fond memory is the day when was able to leave his room for the first time in 11 weeks due to his immune levels beginning to rise again post transplant. This was known as being a Purple Patient which we celebrating by going out for small walks around the local parks each day while keeping the rain cover on Milo’s pram. Places like Leazes Park and Exhibition Park.

Once Milo’s consultants were happy with his immunity levels we were then able to move from the ward on the 19th September and placed in a local flat just a 5minute walk from the hospital, this was known as a halfway house which helped us to gain the confidence that we could get back to normality in the future while still having the full support of the hospital close by and to have regular checks. Another memory of this day was Milo was able to ring the bell as he was leaving the ward! This was a huge moment as we would walk past the bell each day wondering when it would be our turn! While in the flat we were able to visit more of the local area using our car, some of our favourite places to visit were Tynemouth, Jesmond Dene Park and Bolam Lake Country Park, these places are great for getting some fresh air without the worry of being surrounded by other people.

On 22nd November we were given the good news that we were able to go home. We were very nervous but very excited at the same time. We would have to come back for regular appointments but just to be back home was amazing!

While we were in Newcastle we were extremely fortunate that our family and friends back home were eager to help in anyway they could, from coming up to visit regularly to holding various fundraisers to raise funds for the Bubble Foundation ranging from races nights to walking the Yorkshire 3 Peaks. The following year we organised a charity ball to raise money for the foundation and in total with all events we managed to raise £15,000 for the fantastic Bubble Foundation that helped us with so many things throughout our journey!

Milo is now 7 years post transplant and thriving, he leads a normal life and his consultants are very happy with his progress. Milo is now a supporter of Newcastle United due to his connection with the city. At the time of admission we never imagined he’d be where he is now and that is all down to the team on Ward 3. We now enjoy coming back to the RVI for his yearly check ups, Milo’s little sister Mabel loves to hear about Milo’s time in Newcastle and thinks he’s a superhero!

Tamzin - Milo's mum, September 2025.