Stephanie Whitelock has a two-year-old son born with congenital CMV. The family have had to pay for additional expensive therapies not available on the NHS.
Stephanie said: “As a result of my son Gabe's CMV, we face additional costs between £250 - 300 every month. The costs really do mount up. Yearly we have to find between £3,000 - £3,600 to cover these costs. It is largely to pay for additional physio sessions at £250 a month. The rest is hospital car parking and petrol to the hospital and to therapy sessions.
“Gabe has cerebral palsy and development delay. We have a hospital appointment pretty much every week, whether it be physio, speech and language therapy, orthotics, audiology or the paediatrician. He has a walking frame, a standing frame to strengthen his hips and core muscles, a walking frame which he has only taken a couple of steps in. Gabe also has a hand splint, supportive boots, a special chair and glasses for his squint.
“Gabe’s impairments cost the NHS a lot of money through his therapies and the equipment he needs. The economic impact on the NHS from congenial CMV in my opinion is huge and therefore there must be more awareness about CMV and how it can be prevented.
“We regularly see around six different healthcare specialists, including physiotherapist and occupational therapist appointments twice a month, alongside speech therapists, community paediatrician and ophthalmologist for his squint and long sightedness.
“Recently I had to resign from the job I’ve done for the last 12 years to care for Gabe. Despite wanting to continue to work, it was impossible because I couldn’t devote enough time to his therapy. He was suffering so we decided it was best for Gabe for me to be at home with him.
“With Gabe’s frequent hospital appointments, I was taking unpaid leave from work, having already used up my annual leave allowance. Now Gabe is my job. His hospital appointments and therapy are my weekly priorities. Financially, it is much harder, but we have to do what is best for our son.
“We pay for additional physiotherapist sessions to support the ones we receive on the NHS. The NHS support has been brilliant, but NHS physiotherapists have very demanding caseloads so our sessions are limited. Physiotherapy is important for Gabe so we pay for extra support. It is hard and we are grateful our family helps us.”