Caleb has a brilliant quality of life, he has independence

‘Caleb’s life isn’t running on the same course as your average little boy due to Hunter Syndrome. I feel lucky to say Caleb has a brilliant quality of life, he has independence, he doesn’t need a wheelchair, and he’s still learning – most children with this condition stop learning between the ages of 4 and 8.’ Daniella, Caleb’s mum.

Being supported by LloydsPharmacy Clinical Homecare (LPCH) means that 9 year-old Caleb can be treated at home by his mom, Daniella, rather than in hospital.

About Caleb

In 2010, Caleb was diagnosed with a very rare metabolic condition called MPS II Hunter Syndrome. The disorder means that his body lacks an important enzyme required to break down the body’s natural waste, with symptoms including physical illness and learning difficulties.

Caleb requires a weekly Enzyme Replacement Therapy (ERT) infusion that takes up to 5 hours to complete. Initially, this had to happen in hospital, involving a difficult drive into London and long waits that were both tough for Caleb and disruptive to family life. At a time when Daniella was already concerned about his education and integration at school, having the treatment in hospital also meant taking Caleb out of school for a full day.

Given the rarity of a serious life limiting condition like Hunter Syndrome, there was little available information out there for Daniella and her husband Mark when Caleb was first diagnosed, which was scary and worrying. The emotional impact of this, combined with the practicalities of regular hospital trips, took over their daily life. Ten weeks after diagnosis, the hospital introduced Daniella and Mark to the idea of clinical homecare.

No one wants to do an hour trip to a hospital in London!

‘The nurses knew how to integrate into a home environment, so that gave me a lot of confidence and brought some normality to our lives, no one wants to do an hour trip to a hospital in London!’

Caleb was referred to LPCH who arranged for regular deliveries of his medication, and specialist nurses to visit his home once a week to administer his infusion. The nurses treating Caleb were all working with other boys with Hunter Syndrome, which reassured Daniella and gave her the ability to obtain additional valuable information she needed about dealing with the condition. Whilst this alleviated the stresses of regular hospital appointments for a child like Caleb, for whom routine and structure are very important, the treatment process was still an anxious experience.

‘Initially it’s difficult having a nurse in your home environment because at first it feels unusual and abnormal to have someone constantly coming in and out. The infusion can take up to five hours, and having someone in your home for that duration feels a long time too. I spoke to LPCH about this and the support I got was fantastic. They said I could learn to administer the infusions myself with as much or as little support from them as I needed.’

Six months after Caleb began treatment at home, the LPCH nurses trained Daniella to perform the infusions herself. Daniella was taught to perform all stages of treatment, including preparing the equipment in sterile conditions and connecting the line to Caleb ready for infusion. This means she has full understanding and control of the treatment. Mark was also trained to provide support, allowing them both to give Caleb his treatment as a team and as efficiently as possible.

‘Initially while I was still learning the nurse would stay for the first two hours and then sit in the car outside. We had the knowledge that she was there if we needed her.’

The LPCH nurses also provided Daniella with advice and strategies to deal with issues beyond the treatment itself. Due to a needle phobia and Caleb’s inability to verbalise stressful thoughts, Daniella found that Caleb would become distressed and ‘play up’ during procedures. After raising these issues with the team at LPCH, Daniella was advised by the nurses to include Caleb more in the procedure. Caleb is now given his own props, equivalents of the medical apparatus used in his procedure. Through the guidance of the LPCH nurses Daniella has been able to use this and other techniques to calm Caleb and ensure that his stress levels are as low as possible during treatment.