Magnus, Richard and Lea’s Story

“If I had to describe Noah’s Ark in three words? Gold Standard Care.”


Magnus enjoying music therapy with Kirsty

Living with an undiagnosed, life-threatening condition can make the world a scary place for three-year-old Magnus. Half of his short life has been spent in lockdown, and a lot of it in hospital. This has meant many unpleasant and painful experiences for him – a lot of needles, a lot of tests, and two lumber punctures when he was very young. In his short life Magnus has endured many painful things, a great deal of which have taken place in hospital.

This means that his inherent trust in the world and adults is low, and his parents, Richard and Lea, know that if he is going to experience moments of real joy then his trust in the world needs to be built. We spoke to Richard and Lea about how Noah’s Ark Children’s Hospice is helping to bring around that change for Magnus.

---

Since he was two, life-threatening seizures have been a monthly occurrence - resulting in respiratory recovery on the living room floor and even putting Magnus into an induced coma. Despite the best efforts of the eleven consultants Magnus has at Great Ormond Street Hospital, his condition remains undiagnosed. Magnus is simply described as a “complex and unique” little boy.

Since the pandemic hit, the only place outside of hospital that Magnus’s parents have trusted enough to bring their son to has been The Ark. In this time of great uncertainty, Noah’s Ark Children’s Hospice has been the place that Magnus has learnt to trust adults.

“At the Ark he can learn that not everywhere is going to bring you pain. When he arrives at The Ark, he knows that nothing bad will happen to him. The therapy he receives at The Ark is just as important as anything clinical. It’s essential in helping him build trust with the world.”

Lea, Magnus and Richard

The design of the Ark and the services available have created a space where Magnus feels safe to explore, and his parents can trust that they are supported and looked after. Whether it’s been exploring the garden, experiencing the Sensory Room or meeting Santa – The Ark has allowed Magnus to experience real joy and create memories that will last a lifetime.

“The location is absolutely beautiful and the building is filled with such friendly people who really do care. You can see where the donations are going and the impact that the supporters are having. There are so many small details that have made it a safe space for Magnus to explore.

If I had to describe Noah’s Ark in three words it would be Gold Standard Care.” 

---

Music is a big part of Magnus’s life and is a major part of his day – from meal times, to medication, pain relief and sleep. Music is something he really enjoys and, with his father being a professional musician, it’s always been a big part of his life. Kirsty, Noah’s Ark’s Music Therapist, uses this love of music as a therapy tool. Not only does Magnus enjoy it tremendously, but the scientific and therapeutic foundation to the sessions help Magnus to develop his communication skills and build trust with the others.

“The sessions with Kirsty help him with his communication and his ability to participate which, because of lockdown, have really suffered. Kirsty has been amazing at going at Magnus’s pace, which is so important because he doesn’t initially trust adults because of his past experiences. There is a lot of trust to be gained, and the music therapy is a key part of that. Above all Kirsty is a brilliant, professional therapist who is having a great impact on Magnus.”

Because of his condition and the pandemic it has been unsafe for Magnus to attend nursery, so his interaction with other children has been limited. At the Ark, he has been able to enjoy interactive group play, which provides him with a safe space to have that much needed time with other children.

---

At the Ark, the holistic support offered is wrapped around not only the child, but also the whole family. Because of the complexity of Magnus’s needs, it can be difficult for Richard and Lea to have any time apart from Magnus. However, the quality of care and subsequent trust that has been built at the Ark has allowed them to leave Magnus with a carer and watch a film in The Ark’s Cinema Room. They have also booked an overnight stay for Magnus, which will support them during a busy time for their family.

The Noah’s Ark team will continue to do whatever they can to support families like Magnus’s as they face hugely challenging circumstances – helping them to experience real moments of joy and happiness together.

“The Ark has been a lifeline and a second home for us, especially during the pandemic. Magnus has had some tremendous experiences here and some amazing memories have been made. It really is a gold star operation, with the highest standard of care that we’ve seen in our journey with Magnus. Through everything, it will continue to be a priority for us that he continues to come here.”

A huge thank you to Richard, Lea and Magnus for sharing their story with us.

Other Related Stories