Living with Batten

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“There is no doubt that the disease has changed us all. But what doesn’t kill you makes you stronger.”

So how do you cope?

  • Music…”We love music and listen to everything from classical to country or pop music. When the boys lost their vision, they became very in tune with music; it opens the mind up and works as a sanctuary for us.”
  • Stay Active…“When the boys went to school in 2010, we actively took time for us. Andrew loves his exercise and I love my animals.”
  • Accept help from the community…“Freddie and Louie receive respite assistance at Caudwell House, a children’s community home in nearby Southwell. We also get days at Rainbows Hospice and charities like Indigo Kids in Hucknall help too.”
  • Make time for friends…“Battle Batten has brought so many friends into our lives. We used to be really introvert. That’s one good thing to come out of our situation.”
  • Think of the little things…“Every day we wake up and say let’s make memories today. It’s not always easy but we cherish every moment with our boys.”

Day-to-day challenges

Sarah and Andrew both left their jobs to become full time careers for Freddie and Louie, having put dreams and aspirations for their house, family and careers aside. Aside from the financial challenges this brings, there are some real practical issues too:

Sleeping
The boys barely sleep more than a few hours a night, due to low Melatonin levels (the chemical in the brain controlling the sleep/wake cycle) which often leaves Sarah and Andrew exhausted. The family have carers in the house two nights a week but the twin’s parents often have little or no sleep during the remainder of the week.

Medicine
With great medical support, the drug combinations have helped some symptoms but now epileptic, administering the medicine is all the more crucial – though it tastes nasty and there’s lots of it!

“We administer the boy’s medicine in crisps, jelly, whatever they will take! Meds take up to two hours a night.”

Eating
Mealtimes have to be well supervised – loving sensations, Freddie and Louie often make ‘Rainbow Art’ at the dinner tables! Their appetites have improved in the last two years even though there are some allergies. Dining out can be challenging but the family have lots of supportive restaurants and pubs locally who make them feel really welcome.

Living
Sarah and Andrew have had to modify the house with hoist lifts and a disabled bath, ready for when the boys will become too heavy to lift and completely loose their ability to walk. They are also needing to swap cars to adapt to new wheelchairs as the boys grow.

Growing
As the boys get bigger, their balance gets worse and there’s tumbles to look out for. The boys can’t be left in any room unsupervised even for a minute – so when the carers arrive, Andrew and Sarah take a well earned rest!

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