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Gofundme

Posted by marianne on May 30, 2015 at 11:05 PM

We have been taking donations to purchase a new wheelchair for Blaine. Any monies raised above that amount will be used for any upcoming medical services he needs and most will be sent to Dr. Kaler for research. We send money down after fundraisers. Thank you all very much. His gofundme link is "Lend Blaine a Hand".

Still waiting on new meds

Posted by marianne on April 16, 2015 at 9:45 AM

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UPDATE....as you know, we have been waiting for the new experimental meds from Dr. Kaler. i spoke with him last night and we are hopeful for summer 2015!! Keep praying!!!

Fall fundraising

Posted by marianne on October 13, 2014 at 11:35 AM

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Blaine and I decided to have fundraisers bi-annually because it was becoming a little too much for the 2 of us to do, along with our everyday lives. This is an off year....but he still wants to fundraise to keep things going. You can click on "Donations" and contribute right through there with PayPal or you can write out a check made out to Blaine or myself. He started a "go fund me" page over the summer but that didn't go as planned. This is his regular site that we have had for years so we wil... Read Full Post »

Fundraising events

Posted by marianne on May 26, 2014 at 11:55 AM

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Look for our fundraising events through the summer and fall. Trying some things a little differently this year, instead of our usual Get togethers with the band and raffles. Hope to have some good participation!! ❤️❤️❤️❤️

New research meds on the way

Posted by marianne on May 26, 2014 at 11:55 AM

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Well, we have been waiting 5+ years, but after speaking With Dr. Kaler over the past couple of days, it Seems the experimental new meds we have been Waiting for (L-DOPS) will be arriving soon. This will help with Blaine's orthostatic hypotension, Migraines, dizziness, etc. Very exciting news for us!!

4th Annual Menkes Fundraiser

Posted by marianne on July 14, 2013 at 5:25 PM

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Saturday, October 19th at the Cumberland Police/Fire Union Hall!! You know the deal...Str8 On providing entertainment...tons of raffles, great food and all for a GREAT kid!! Come show your support and if you can't make it, help him by making a donation...RIGHT HERE...through paypal on his site.

3rd ANNUAL FUNDRAISER

Posted by marianne on June 7, 2012 at 10:15 AM

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Blaine's 3rd annual fundraiser will be held on Saturday, August 25th at 4 p.m. at the Portuguese-American Social and Athletic Club in Smithfield, RI.

There will be raffles and a silent auction, live bands and lots of food!!! If you have any raffle donations please contact me at [email protected]. If you would like to buy a ticket or donate, I do have tickets at school or you can go to the link on the home page here and donate th...

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Blaine's Got Copper Items

Posted by marianne on June 4, 2011 at 8:36 AM

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Got Copper items

Hats $15.00 T-shirts $10.00 Car Magnet...

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No meds yet?

Posted by marianne on May 31, 2011 at 7:22 PM

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Well, we were waiting since fall 2010 for some meds to come in from Japan that were not available in the U.S. We were told fall, then by Christmas, then beginning of the year and were disappointed to recently learn that we will not be getting it. His specialist though, Dr. Stephen Kaler, will be working on making the meds himself at the NIH, testing them and then Blaine will be 1 of 6 boys to try it out, if FDA approved...it'll be a while though. YA CANT KEEP ...

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Skyler McCracken

Posted by marianne on February 3, 2011 at 9:19 PM

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A Family’s Race Against Time

by Missy Bird Tooele Transcript Bulletin

Feb 03, 2011 | 133 views | 0 | | 2 | |

One-year-old Skyler McCracken has Menkes Disease, a rare genetic disorder that prohibits the body from transporting copper. Skyler receives daily copper histidine injections.

- courtesy of Lori Hicks

slideshow Tooele couple battle to save young son from rare disease

Jon and Stacy McCracken knew their 1-y...

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Boys with Menkes and their stories...

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