Blaine's Menkes Disease Fundraising Page
$702 Raised
70% of $1k goal
18 contributors
2 Years running
It was determined that my little boy was positive for Menkes Disease. I prayed every night that a miracle would happen. It did. Blaine Joseph Grenon was born on July 18, 1995 in Providence, Rhode Island. Everything went well and he was home in 3 ... More ...

It was determined that my little boy was positive for Menkes Disease. I prayed every night that a miracle would happen. It did. Blaine Joseph Grenon was born on July 18, 1995 in Providence, Rhode Island. Everything went well and he was home in 3 days. Blaine, through the help of our very, very close friend and medical specialist, Dr. Stephen Kaler (National Institute of Health), began copper injections twice a day. It was a hard thing to do but I knew it was his only chance. Blaine was doing everything he should be at the correct ages and was such a great baby. Everyone loved him to pieces. We made two trips each year to the NIH for those first three years of his life. Dr. Kaler and Blaine became very good friends. Blaine had early intervention at home before starting a regular classroom Kindergarten in the fall of 2000. In September 2001 Blaine's sister, Kalen was born and they have been great siblings since. Blaine joined Cub Scouts when he was in Kindergarten and stayed with it until he bridged over to Boy Scouts in sixth grade. His car even placed first in the local pinewood derby. He is a great scout. Blaine also played a year of baseball in 2001 and has his own baseball card. Blaine always did very well in school. He has been an average to above average student all through elementary, middle and now has graduated high school. He falls about 3-6 months behind in gross motor skills.

Blaine has a super fun personality and sense of humor for all he has had to go through. He has an abundance of friends (young and old) with a couple of close, best friends. He loves swimming, hanging out with his friends, video games, board games with his family and traveling to Cape Cod. In June of 2000, Blaine was granted a wish through his neuroloigst, Dr. Maria Younes. He told us he would like to go to Disney. He took his granparents, his mom and his cousin Sean. We stayed at Give Kids The World and had the time of our lives. The Rabbit tucked him him at night and he was able to have ice cream WHENEVER he wanted it. We enjoyed meeting all of the Disney characters, most of all Mickey himself. We went to Sea World and had front row seats. Blaine was even kissed on the cheek by a dolphin. That trip will be something we could never repeat and something we will all treasure forever.

Medically, Blaine is an inspiration, He is a miracle. He is a fighter. He has more fortitude and resilience than any person I have ever known. He has been through quite a lot and still gets up every day with a smile on his face, When he was younger he had hyrnea surgery but nothing else major up until two years ago.

As you can imagine, Blaine has many doctors (all who have been working with him since he was a baby). His orthopaedic doctor, Dr. Craig Eberson, at Hasbro Children's Hospital, performed a double knee surgery back in the summer of 2008. This was to place two corrective plates, one in each knee, to help straighten his legs. This surgery was successful for the most part; however, we decided to add another plate into Blaine's left leg this summer and remove the plate from the right leg. The right leg seemed to be correcting itself a bit faster.

Blaine fights every day. Nothing comes easy but he never gives up. We don't know what lies ahead as Blaine is the ambassador for this disease, and oldest living with it. I'm sure whatever he decides to do, he will continue to give 100%. PT twice a week, college courses starting soon and his license soon. :-)

At the beginning of summer 2010 Blaine was diagnosed with orthostatic hypotension, which causes him to have trouble standing up for periods of time, causes migraines, among other things. Once again, Dr. Kaler has stepped in and has been able to locate a medicine that Blaine will hopefully start in the fall. This will make walking around the high school campus much easier on Blaine. Overall, he's doing very well. He certainly has a lot of people who care an awful lot about him; some in different ways than others. We are all extremely proud of Blaine. He's a sweet, wonderful, kind hearted young man with a heart of gold.

UPDATE......The meds we were waiting for since last fall to come in from Japan, we recently learned are NOT coming. They are not available in the U.S. so his specialist is going to have to make the meds himself, test them out on laboratory mice and then Blaine will be 1 of 6 boys who start out on another EXPERIMENTAL med. =( This medicine will help Blaine be able to stand up longer, not get dizzy and help with his migraines.

NEW UPDATE: The new meds will hopefully be here by the end of the year, 2014.

Blaine sells " Got Copper" t-shirts, baseball hats and wristbands.

thanks, in advance.

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