For the past two weeks I have had the yearly privilege of residing on paradise-Vinalhaven. I will selfishly say that one of the best perks is I married into being able to make the seasonal voyage to this island off the coast of Maine. Its a place where one can recharge, de-stress, go gluttonous on lobster but most of all just SIT and have the most uninterrupted family time.
Every 5 years my wife's extended family has one of the most epic family reunions in existence. It's a three day adventure filled with just about every family activity one can think of. It's an event where if your not having fun you seriously need some help once returning to reality. This years event held roughly 300 people and the one truth that rings with my wife's family is that every single person loves and looks out for each other. All conversations stem from building each other up instead of bringing each other down. Every family member is there as a rejoice and energy of making sure everyone is having fun but most importantly that they are cared for. There is definitely no I in any team family dynamic during the three days of celebration. At the end of the day I married into the family but I always walk away feeling like I am blood. I always try and look for the positive in every situation but when I come away from time in Maine in conjunction with supporting family dynamic I believe there is nothing that can stand in my way.
While on the island this year I really tried to maximize the amount of run training I could get in and in 2 weeks I managed a little over 150 miles. I had the most amazing trail runs, my longest training run ever of 25 miles in which I saw no cars/people for 2 hours to the most breath taking views that make the effort of running seem so simple. There was one run that brought me to tears though as it was a mixture of emotion, inspiration and a drive to constantly strive to be better through helping actions.
Meet Khloe- the beautiful little girl in the first picture (pink jacket in second) she is one of the most amazing little girls I have ever met. For as much as she has had to go through in her life she is one of the strongest people I have ever come in contact with. A strength at three years old that I can only hope to attain someday. Strength taught by her loving and inspirational parents, Kim and Kevin who have battled along side of her keeping faith in getting her through every day.
For the past couple years Khloe has been dealing with epileptic seizures that have been progressively getting worse and only until this summer has been given a specific diagnosis. Doctors this summer have diagnosed her with Dravet Syndrome which is also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge. Development remains on track initially, with plateaus and a progressive decline typically beginning in the second year of life. Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated conditions, which also need to be properly treated and managed. More information on Dravet syndrome can be found at www.dravetfoundation.org.
Being a parent of three girls it breaks my heart to see any kid/child have to suffer and go through any disease. Whether its a form of cancer, immune suppressing disease or in Khloe's, case severe epileptic seizures which can last upwards of an hour its been extremely hard to understand- Why them??
I have been putting in all these extra miles this summer in prep for two races in my future. One being a 50 mile trail run in October and then the next a 100 mile trail run next summer. Both are distances that I have never completed before and are mentally challenging. What I decided on my run was that from that moment on I would use every avenue I have to dedicate every mile I run leading up to October (and my additional Ultrarun) towards-TeamKhlo (Khloe's website). I want to dedicate everything I do in prep, racing and writing towards raising awareness of this disease which has no cure currently and hope that with a little prayer, awareness and fund raising that we can bring Khloe and her parents strength to prevail.
I have set up a gofundme page which anyone and everyone can donate whatever they think is appropriate. One of the most important issues right now is the frequency at which she is having seizures so that next appropriate step in her care is a seizure dog that can detect a seizure before in happens sometimes up to 45 minutes prior. The faster we can raise the money the quicker this incredible family can get the dog into their home to help Khloe remain safe and healthy.
GoFundMe: TeamKhlo
http://www.gofundme.com/qk227eys
So please join me in raising awareness, spreading the word and donating to a cause that we know will go towards helping a little girl live a long life filled with laughs and hugs.
On a closing note what my wife's family has taught me is exactly what I always say....they live life to the fullest, they are real people who care, love and listen- GO FLAGGS!!! and more important the Make It Count!!!
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