Monday, February 10, 2014

Save Little Michael

Normally, I blog about living with Brendan's FPIES and other diagnoses.  Today, the focus of my post is on a little boy named Michael Gonzalez.  Brendan has never met Michael, since his family lives in Florida, yet they have a lot in common.  FPIES and mitochondrial disease is the common thread for these two 4 year olds.  Brendan is at the beginning of his journey with mito but we are no strangers to rare and difficult to treat diseases. 

Although I wish I had connected with Michael's mom, Jennifer, under better circumstances, I am thankful to know her.  She is an amazing mother who fights every day for her son.  Little Michael has a rare form of mitochondrial disease called mitochondrial neurogastrointestinal encephalopathy disease or MNGIE.  Until recently, Michael's only safe food was the unflavored form of Neocate Jr formula.  Last year, the makers of Neocate (Nutricia) changed something in the formula even though they won't admit it.  Michael lost his only safe food as a result.  He has less than 100 cans left and when that is all gone, he will only have one brand of hemp hearts (Manitoba Harvest) and one brand of sugar (Florida Crystal Organic Cane Sugar) to keep him alive.  Hemp and sugar is simply not enough to sustain a child.  Meanwhile, Michael's family is raising funds for an experimental bone marrow transplant which has the potential to reset Michael's genetic errors and help him to live longer.  The doctors believe his baby brother is a match.  In order to begin the process of testing, the family needs to raise $50,000.  The total process will cost $300,000.  Insurance will not pay for it.  This is Michael's only chance to be able to eat food some day. 

So why am I getting involved?  We hear about heartbreaking stories every day and go about our business.  I think we are all guilty of doing that.  This is different though.  Michael's story hits close to home.  I have a child with these same diseases.  My husband Justin and I understand how scared and isolated Michael's parents must feel.  For four years, we have had no answers, only more diagnoses to add to Brendan's complicated list.  We don't know what the future holds for our son now that mitochondrial disease is in the picture.  What we do know is that we can fight like hell to help our son and other children affected by these diseases.  If anyone has ever wondered what they can do for our family, in support of Brendan's FPIES and mito, I have an answer.  Please, please help us to help Michael and his family.  How can you show your support?  You can get in contact with me if you would like to donate money, products/goods, fundraising ideas, media contacts or your time.  You can do something as simple as raise awareness of mitochondrial disease and FPIES by sharing Michael's story with everyone you know.

Justin and I will be holding a fundraiser/candlelight vigil in honor of Michael on Friday, February 28 at 6pm at The Den coffeehouse in downtown Bothell.  Please join us!

Thank you for reading my blog and your continued support of our family's journey as well as other families we meet along the way.  And to Michael's mom...Jennifer, thank you for sharing your mito journey with me as we begin our own.  You are truly an angel.