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Mito ribbon tattoday was one of the happiest days we’ve had in a long time. one of the many highlights of our day was when adam, the girls and i drove up to round rock, tx and participated in the first annual “energy for life” walk of central texas. the walk was one of 21 walks held across the u.s. to raise awareness and raise funds to find the cure for mitochondrial disease. that in and of itself made it important, but the walk also marked the very first day that we as a family faced our enemy in the face and took a deep, proud stand against it. it was our first step beyond acceptance into action.

Iv on the way to EFLLucia on the way to EFL

(girls on our drive to round rock)

i could sense the excitement begin to build up in adam and in me even as we drove to the walk. we were finally being brave enough to not only meet other families in our situation, but also to courageously stand in unity with them. it felt empowering. it took away a little bit of the loneliness that comes with this unknown disease – the 250+ people walking confirmed that we are not, indeed, alone in this fight.

Team LuciaTeam Lucia

(team lucia)

the first thing that caught my eye as i walked into the designated park pavillion was a poster of a gorgeous little girl who had ended her fight with mito last year. she was a little under a year old. behind me was yet another picture of a little girl who had lost her battle to this disease not too long ago. my heart almost fell on the floor. filling up the pavillion were many friends and family gathered around other little children with disabilities, feeding tubes and tired gazes – their names displayed proudly on the back of colorful shirts.

Beginning EFL

the dj soon announced the beginning of the walk and the crowd gathered at the starting line. as we were given the go ahead to walk – the enormity of the moment hit me and i started to cry (or as my friend a.m. and i like to say – my eyes got sweaty). i wanted to run away, forget the walk and hide myself in sadness, but the crowd momentum propelled me and i let myself feed off of their determination and will to walk forward. we all shared a similar, impossible-to-describe pain – but we were together and we could help each other take the next steps. it’s amazing how you can look across a crowd and instantly recognize a mother of another medically fragile child simply by the melancholy her eyes. yet meeting her gaze you find such a sweet moment of understanding and support.

the walk turned out so peaceful and fun as isabella chatted and lucia let out happy squeals. afterwards, we were able to get a family picture by a professional photographer and mingle with the other walkers. we had a chance to talk to some of the family members of one of the little girls who passed away. i also had an opportunity to discuss afos (leg braces) with a nurse and get some helpful info since lucia should be getting fitted for those within the next month. and last but not least, i had the great opportunity to meet reagan’s mom. i’ve been following their story since the mention of mitochondrial disease was on our doctors’ lips. it was a delight to actually meet them in person as reagan’s parents are two very kind people.

it was a sweet, emotional morning and we were grateful God gave us the opportunity to be a part of it.

to kick off mitochondrial disease awareness week i will leave you with a link to reagan’s blog. reagan is a beautiful 5 year old girl who has been diagnosed with infantile spasms/seizures as part of her mitochondrial disease. she has a feeding tube like lucia (a much cooler, light-weight tube pump that we now must have). please take some time to read her story and learn more about the varying effects of mito disease on children. and don’t forget to spread the word! the more people know about mito, the more people care and the more money is funneled toward finding the cure!

reagan’s blog: http://reaganleigh.blogspot.com/2007/03/my-story.html

thank you, our friends and family, for being a part of our journey! can’t say it better than with these signs posted along the walk…

Mito cureRaising awareness mitochondrial disease

i leave you with more pictures ours from this morning and check back tomorrow for another look at life with mitochondrial disease.

you can't get much prettier than this (in my humble opinion)Butterfly beautyLucia and her tubeWith my baby getting her first tatMonkey barsInstafriends

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