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| The Fish girls: Alice, left and Natalie, right - Source: Fishes For Marrow Wishes-Sisters |
From Denny: It's time to stop the madness along with the childish political campaign bickering. Americans don't want to hear it anyway. There are bigger issues at stake like the lives of these two seriously ill little girls from Utah, Natalie and Alice Fish. In light of what this one American family is enduring should shame all the national politicians who are so self-absorbed they have not stopped long enough to notice.
I'm so disgusted with the 2012 election's childish name-calling tone and enabling media encouraging it that I change the channel constantly. As a respite yesterday I went up on my page at Google + to catch up on those who friended me. Lots of really interesting people from all over the world. I grew up internationally and it's always great fun for me to see who's new that popped into my world.
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| Alice kissing Daddy - Source: Fishes For Marrow Wishes-Sisters |
Well, it turned out these little Fish girls' parents friended me (that's a link to their Google+ page). It's a good thing I always take the time to read a profile page or I might have missed this struggling life drama of a middle class family. These little girls are real troopers and have been living in and out of hospitals since they were born. Their parents are to be commended for going the distance with not just one child but now two with this rare problem.
Natalie is now eight years old and Alice is two. The story of their journey is an incredible one. Their father put up a YouTube video (provided below) to describe a condensed form of their journey with the various illnesses and treatments. By September 2011 the family was genetically tested and finally had a name for all the bizarre happenings: Leaky SCID's, which is Severe Combined Immune Deficiency.
Natalie
This genetic disease is so rare that only two cases a year are reported in the U.S. The older sister, Natalie, has dealt with Legionnaire's Disease, pneumonia and swine flu. That nasty H1N1 virus affected her so badly her lungs filled up with fluid and her brain swelled. She had to be placed into an induced coma to survive. Natalie spent her sixth birthday completely unaware she was in the hospital.
When she came out of the coma her motor skills were severely impaired. Natalie had to relearn how to walk and toilet train. She also lost some of her hearing. She has improved greatly over the past two years though.
In the early years of figuring out what Natalie had she was treated with steroids and numerous blood transfusions. The problem for doctors was that her body kept fighting the new blood until it was gone and the cycle of blood transfusions had to start all over again.
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| Source: Fishes For Marrow Wishes-Sisters |
Alice
Then along came Alice who is six years younger. Her issues presented far earlier with severe infant acne indicating maybe her immune system was in trouble. What followed was a severe case of chicken pox and a lot of pain. Sleepless nights for the parents too as they held their sick child all night long. We all know what a toll these long term illnesses have on care givers.
Finally, this past September 2011, the whole family was genetically tested. It revealed the girls were suffering from the rare immune dysfunction of Leaky SCID's (Severe Combined Immune Deficiency). From there doctors began preparing the family for the next treatments of chemo and bone marrow transplants.
Blair
Natalie got lucky as her much younger brother, Blair, was the only one in the family who was a perfect match. But what most people may not know is how much pain he went through to help her. What a brave little guy. He was scared at first but then he told his grandmother, "My blood is Natalie's medicine."
Blair had to endure the doctors taking bone marrow from both of his tiny hips. They required 300 ml and that amounted to 60 needle insertions. Blair's hip bones are now as soft as mush because of the procedure which is a painful recovery. He's a life hero too.
Little Alice did not have a donor match from her family. However, a donor was found through a search. All the family knows right now is that she is a twenty year old woman who chose to be so generous. The family will not be able to find out who she is or contact her for another year. They are most grateful for her help.
These chemo and bone marrow transplant treatments still carry what might be side effects for life. The girls may still face hearing loss, infertility and learning disabilities.
This American family has been on a long emotionally exhausting eight-year odyssey of terrible struggle. So far, they are enduring, though exhausted and now basically financially broke. It's real life cases like this that remind us how America needs a real health care system that does not send families into financial poverty while trying to save the lives of their children.
Of course the parents, Tyler and Lisy Fish, have not been able to work or work much as the girls require constant care during these marrow transplants. Currently, the family maintains a blog on Blogger where you can learn about how the girls are doing: Fishes For Marrow Wishes.
Right now the family is trying to raise funds, a mere $10,000, for the just the basics of caring for the girls like gluten free meals, prescription medications and cleaning supplies. All the donations go to their needs: 100 percent. They are currently up to $8,900.
Here are the various avenues of donation if you wish to help with their recovery:
* Over at Paypal, To: email address is fishesformarrowwishes@gmail.com
* Donations by mail:
PMB #5475406
West 1100 North Suite 103
Highland, UT 84003-8942
* Wells Fargo, any branch, donate to: Fish Children Donation Fund
* Any UCCU branch, donate to: 2 Fish Marrow Wish Fund
* If you would like to donate another way: contact garyfish@aol.com
These little girls sure could use some publicity. To date only about 12,000 people have visited the parents' blog. As a veteran blogger I know it takes a couple of years before you can penetrate the public's awareness and still may remain a small niche site. Since I've experienced millions of visits collectively to my many blogs the past couple of years I thought I'd use my blogger clout to help raise awareness for them.
Since the Obama White House, the Pentagon, the CIA, recent new fans over at the FBI, conservative and liberal bloggers on Twitter and my fellow journalists all read this blog, I'm calling on all of you to spread the word and rustle up donations to help this family. I'm sure they could make good use of more than a mere $10,000 as this is a long term health problem for the girls.
In fact, I'd like to see Obama-Biden and Romney-Ryan stand on stage together and give of their campaign monies to this family. If America can "donate" $1 billion in foreign aid to the Egyptian military we can do better right here in America. It's about time our national politics did something substantive. Go ahead, boys; schedule the event. I'm counting on you to do the right thing.
We Americans are known for our generous spirit of giving. Let's pull together for this family and let them know we are sending prayers and goodwill thoughts their way to strengthen their girls' immune systems to completely heal - along with our donations.
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