Heartbreaking
Army Rallies Around Couple Whose Son Is Dying of Rare Disease
One military couple is suffering through the worst fate that can befall any parents -- their 3-year-old son, Matthew, has a fatal, incurable disease and they can do nothing but watch his condition worsen and wonder how many days left they have with their precious boy. Even more horrible, the pair found out their son has the rare disorder, called Krabbe's, because both of them carry a gene for it. So they've decided not to have anymore children. Meanwhile, the Army couple, Luke and Carrie Beasey, want to warn as many as possible about the signs of this devastating disease.
The Beasey's son, Matthew, started off as a "normal child," Luke, an Iraq war veteran, told The Savannah Morning News. But soon he was having "little seizures," and eventually was having up to 60 seizures a day. For a long time, no one could seem to diagnosis his condition.
Eventually the devastating news that Matthew had Krabbe's was confirmed. There is no cure for it, and it is always fatal. While the couple say that Matthew has his "good days," he is at the point now where he cannot walk, play, or even hold his head up. They say they will not go to "extraordinary measures" to keep him alive longer.
Because the condition is genetic and the couple have the extreme misfortune of both being carriers of the gene, they have decided to not have anymore children.
The couple say they are grateful for the support and assistance the military and military families have shown them. Luke says talking to other soldiers has helped him cope. And friends have also set up a donation bank account so they can buy some of the things on Matthew's wish list, such as special swing that would allow him to sit outside and watch his dogs.
Nothing can make up for this family's suffering, but at least they have the support of the military community, and others. And hopefully they can help bring attention to this disease, making more people more aware of it.
Have you heard of Krabbe's disease?
Image via US Army Africa/Flickr
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billsfan1104
buffalove23
taniamorse85
Billsfan stole the words right from me, lol. I kept up with Hunter's story for a number of years. I really admired Jim Kelly for his love for his son and his strength through all the difficult times through Hunter's life. I'm also so glad he set up Hunter's Hope to help those who are dealing with this disorder, whether they are patients or loved ones. Krabbe Disease is a devastating disorder, but with the support of this organization, hopefully it gets a little easier to deal with. I hope the Beasey family still has plenty of good time together.
USMCwife0530
Gretta
billsfan1104
awelch75
AprilJune
A friend I went to high school with has a daugther who was diagnosed with the same disease last year. She was developing totally normally, then at 8 months started losing all her milestones: couldn't eat, sit up, smile, see, etc. I know there are some treatments that can prevent further damage to the nerves (but not all people with Krabbes are candidates for the procedures), but it is very tragic that it always is fatal. It is heartbreaking.
Tiffany Moore Howe
To All Parents
by Edgar Guest
"I'll lend you for a little time a child of mine," He said.
"For you to love the while he lives and mourn when he is dead,
"It may be six or seven years, or twenty-two or three,
"But will you, till I call him back, take care of him for me?
"He'll bring his charms to gladden you, but should his stay be brief,
"You'll have his lovely memories, as solace for your grief,
"I cannot promise he will stay, since all from earth return,
"But there are lessons taught down there I want this child to learn..."I've looked the wide world over in my search for teachers true,
"And from the throngs that crowd life's lanes I have selected you.
"Now will you give him all your love, nor think the labor vain,
"Nor hate me when I come to call to take him back again?
I fancied that I heard them say: "Dear Lord, Thy will be done!
"For all the joy Thy child shall bring, the risk of grief we'll run.
We'll shelter him with tenderness; we'll love him while we may,
And for happiness we've known forever grateful stay.
"But should the angels call for him much sooner than we'd planned,
"We'll brave the bitter grief that comes and try to understand."
pipper2
Goes out to the family as they take this hard journey. There is a great support community on Facebook for families of affected children it has helped me a lot. Also in Pittsburgh there is an amazing Dr., Dr. Escolar who specializes in krabbe and she is wonderful.