It’s not just the words that matter, but the actions behind the words.
Sometimes, those actions are inexpressibly sad, like when a mother scrimps and saves for years to get her departed son the perfect gravestone, only to see it immediately disappear.
Other times, the actions can alert experts to a hidden killer.
Tragically, that killer may be invincible but at least the experts know what they’re fighting. At least the parents can believe in a chance.
The LaFever family of six is a beautiful family of mom, dad, 2 boys and 2 girls. Recently, the mother noticed some odd behavior with one of their daughters, who had stopped communicating completely.
As it turned out, the tragedy that was about to unfold was twice as sad as first anticipated.
“…[I]n December 2016, Brynne was admitted to the hospital for five days of testing.
During that time, it all became clear. Brynne’s younger sister, Kendall, was in the room during an appointment with the pediatric neurologist when the doctor saw that the two had a tragic commonality:
‘After noticing some similar early symptoms in Kendall he said words I’ll never forget, ‘this changes everything.’
From that moment forward he knew of a specific test that he would do to confirm what he suspected, Niemann Pick Disease Type C.”
Both Brynne and Kendall tested positive for the rare, fatal disease, Niemann Pick Disease Type C or ‘Childhood Alzheimers.’ According to the Mayo Clinic, Niemann Pick Disease Type C is:
An inherited neurodegenerative disorder caused by an intracellular lipid-trafficking defect.
The disease can happen at any age, but half of the people diagnosed show symptoms before they turn 10.
The disorder affects the brain, causing difficulty talking, loss of coordination,. and an enlarged spleen or liver.”
As bizarre as the illness is, it turns out that the younger one is when the symptoms first show themselves, the shorter the lifespan.
The LaFever’s are holding out hope that an experimental drug treatment will help extend the family’s time with 8-year-old Brynne and 6-year-old Kendall.
And you can help, too.
The family has set up a GoFundMe site that represents the two precious little girls with the hope of increasing awareness for a very rare disease that appears to be a long ways from a cure.
Being a father of five myself, I can’t even imagine the heartbreak of losing one child, let alone two.
This is an incredibly sad story and I do hope that God smiles down upon them with blessings and miracles.
They are going to require a spiritual helping hand in a huge way.