MUM-OF-TWO: ‘My beautiful little girls have Alzheimer’s’
Pam Andrews’ daughters, aged just seven and two, are battling a rare and fatal illness – but she’s determined to keep fighting for them
Watching her two little girls happily splashing around in the pool is bittersweet for Pam Andrews. It’s the same with every new activity and achievement – each one tinged with sadness.
Tragically, Belle, seven, and Abby, two, are both suffering from childhood Alzheimer’s, meaning that at some point before their 10th birthdays, they could lose their ability to walk and talk. Heartbreakingly, their memories will fade and they may not be able to recognise their parents or each other.
The sisters were only diagnosed with the degenerating genetic disease, otherwise known as Niemann-pick, last year and it’s doubtful they will live beyond their teens.
‘death sentence’
Pam, 44, who is married to lawyer Chris, 45, says: “Nothing prepares you for finding out your children have a death sentence and knowing that everything that makes them who they are will eventually be ripped away.
“To think that one day they may not know who I am is completely heartbreaking. But we have to put our grief on hold and fight for them. We’re determined they will live their lives as normally as possible – and we will do whatever it takes to find a cure.”
Pam and Chris met online in October 2006 and Pam fell pregnant three years later.
Belle arrived in March 2010, weighing just 5lbs 2oz. At her routine two-week health check, her doctor was concerned as she had an enlarged spleen, indicating something was wrong – though further tests showed no sign of the disease.
“We were so relieved. And as her spleen hadn’t got any bigger, we were told there was nothing to worry about,” says Pam, a business developer.
But as she grew, Belle failed to meet her developmental milestones – her speech wasn’t as good as it should have been and she fell over a lot. It wasn’t until 2016 that blood tests delivered the devastating blow Belle had Niemann-pick Type C1, also known as childhood Alzheimer’s. The disease causes
silent carriers
Pam says: “The doctors hadn’t tested for it before because it’s incredibly rare, with between just 2-3,000 known cases worldwide. We thought it must be a mistake – how could our vibrant daughter be suffering from a disease normally associated with elderly people?
“It turned out Chris and I were both silent carriers of the faulty gene and that it was simply terrible luck. I felt despair, grief and hopelessness.”
Tragically for the couple,
their younger daughter Abby, then aged 21 months, tested positive too.
“We felt like the unluckiest people in the world,” recalls Pam. “It was cruel – how would we possibly cope with both girls being robbed of their lives?
“But eventually Chris and I pulled ourselves together and vowed to stay strong for Belle and Abby and not give up.”
LIVING IN THE MOMENT
Now the family are determined to make the most of the time they have left together.
Pam, from Austin, Texas, explains: “We’re always having picnics and movie nights. I try to live in the moment as much as possible and enjoy every second I get with them.
“Belle walks with an awkward gait and her speech is slurry, but she goes to school and loves playing with her friends. Abby doesn’t have any symptoms at the moment and does gymnastics every week.”
The sisters are now taking part in a clinical trial to help slow the progress of the disease.
Pam says” “Both girls have a drug injected into their spine under anesthetic every two weeks for as long as they can. They’re so brave about it and it helps that they have their treatment together. Even though the odds are stacked against them, we hold on to the hope the drug will help to prolong their normal lives. We’ll never give up.”
❛TO THINK THAT ONE DAY THEY MAY NOT KNOW WHO I AM IS COMPLETELY HEARTBREAKING❜