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Thank you Weatherman!
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I’m hoping the weather forecast will be accurate for once on race day! No more shuffling and sweating in Cayman ….. time to layer up and stride out!!!
Final Countdown
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With mounting nerves and uncertainty for November 1st, its time to ground myself and feel grateful for what ultimately has been an incredibly rewarding journey over the last ten months – emotionally, physically and mentally. Every time i catch myself feeling daunted by the 26 odd miles that lie ahead, I think of Persephone who faces her own daily challenges with such strength of spirit and enthusiasm that I can’t help but be in awe of her and everything she takes in her stride.
Our latest battle has been keeping Persephone at a healthy weight, facing the difficulties she has with her motor skills and movement that impede her effective feeding coupled with the inevitable decline in energy she experiences from her inability to consume and absorb the nutrients her growing body so desperately needs. Despite the latest developments, we ruled out, by a process of elimination through tests and studies, the more menacing possibilities that might have underpinned her weight loss. We breathed a sigh of relief upon confirming that the tumors in her brain and spine have not grown significantly. Our plan of attack is a super-high calorific diet coupled with potent supplements and half days at school to conserve energy. We’ll be monitoring the results over the next six weeks in the hope of avoiding surgery for the placement of a feeding tube, which would be the next logical step in improving her nutrition. The whole family has been enjoying (a little too much) the indulgent snacks that we’ve been encouraging our little fighter to eat at every opportunity but for her sake, we’ll suffer the occasional bowl of Haagen Daaz …
The amazingly dedicated team at Miami Children’s Hospital makes every visit one to remember, from doctors taking time to be her ‘bedside buddies’ with hour-long ‘Guess Who’ and ‘Sorry’ play sessions, to visiting princesses and support dogs to cuddle. Every time the hospital succeeds, to our disbelief, in creating fun and happy memories in Persephone’s heart, so much so that she is always excited when the next visit to see Dr Bauer in Miami comes around! Thank you Miami Children’s Hospital for making this bumpy road of NF and its often sinister surprises a smoother ride for us all.
CTF Platinum Pacer
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With less than a week until race day, we want to say a big THANK YOU to everyone who has donated so far, pushing us way over our $10,000 fundraising target and raising much needed funds to find a cure for Persephone’s genetic condition, neurofibromatosis (NF). You all deserve this recognition from the Children’s Tumor Foundation for helping us to spread awareness of NF!
End in Sight!
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It has been a rough few weeks but with the big day just one week away, the end is in sight! I’ve been adhering to a strict regime of low impact training since I finished the Kauai half marathon and discovered in the last few miles a niggling injury which ultimately has been diagnosed as a fractured bone in my right leg. A daily grind of acupuncture, massage, rest, heat and reformer work has been made much easier with my little fighter nursing me every step of the way! How quickly things can change in this endurance game!! The Kaua’i event was definitely worth it through and I loved every minute until the last few painful miles!!! After rediscovering the island 15 years on, the pure energy and spirit of Kaua’i remains unchanged notwithstanding the slow spread of development across the island. I understand why I was drawn back to this wonderfully spiritual place with its prehistoric sense of majesty. What better place to be humbled and reminded to trust in nature and life, not to try and control the waves but learn to ride them! The beginning of the race was absolutely magical, watching this makes me want to do it all over again. Maholo!
Shout Out to Jessie’s Juice Bar
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The countdown is on!!!!!
In 8 weeks I will be running in the 2015 TCS New York City Marathon for my daughter Persephone who suffers daily from the physical symptoms of brain and spinal tumors as well as learning difficulties associated with the genetic condition Neurofibromatosis or ‘NF’. I am running as a member of the Children’s Tumor Foundation Endurance Team. The Children’s Tumor Foundation is a non-profit organization dear to our family’s hearts and is dedicated to Ending NF Through Research and to improving the health and well-being of individuals and families affected by NF.
Neurofibromatosis is a genetic disorder that affects 1 in 3,000 people regardless of ethnicity. In the past 6 years our daughter Persephone has undergone regular MRIs to monitor the growth of tumors in her brain, optic nerves and spine as well as regular occupational and speech therapy to deal with developmental and learning challenges. Despite living with this condition, Persephone has an incredibly positive spirit, bringing love and light into the lives of her family and friends. I am proud and excited to run to raise awareness for NF and show Persephone that with determination and hard work, anything is possible.
There are so many local businesses in Cayman who have supported our family’s fundraising efforts over the years. Today, we thank Lachie and Jessie from Jessie’s Juice Bar in Camana Bay for stocking our ‘I Know A Fighter’ hats – please stop by and grab one for summer. $20KYD for adult or kids sizes, all proceeds go to the Children’s Tumor Foundation to fund research for NF and help children like our daughter Persephone living with this devastating genetic condition. Limited numbers also available at Bon Vivant, Carey’s Karma Closet, Kid’s Karma Closet, Anytime Fitness and Little Trotters Nursery.
Heading for the hills ….
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Its been a long, wonderful summer and I’ve been lucky enough to travel the world with my three little monkeys. Combining marathon training with globetrotting has, however presented its challenges – from navigating new cities to squeezing longer runs in between sightseeing and busy itineraries. This article amongst others was invaluable holiday reading and helped to keep things in perspective …! With 8 weeks to go until D-day the logistical nightmare of fitting in runs whilst travelling throughout the UK, America and Italy with three small children has proved to have been worth the effort. Having trained in my home town Grand Cayman for months, the hills of the English countryside and Tuscany were a bit of a shock to the system – flying downhill into Tuscan sunsets felt amazing, and running back uphill in the dark predictably painful …. often necessitating a post-recovery glass of Chianti. However, with the help of some very dear friends and family (in the form of affordable childcare ..!) I’ve kept up my training and my mileage and am now ready for the real work to begin!
With the kids settled into the routine of school, I’m once again heading for the hills and packing (literally as I type) for the Kauai marathon to run the half marathon as part of my training. The one and only time I’ve visited Hawaii was almost 20 years ago and I’m looking forward to a sentimental reunion …. once I get over those hills!!
Hello world!
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I’m so excited to be launching my blog today, six months away from the 2015 New York Marathon!! I decided to run my first marathon in New York last November and have been getting to a base level of fitness ever since – soon, the really hard work will begin!!
This race is very close to my heart as I am running to raise awareness and funds for research into neurofibromatosis (NF for short), a debilitating genetic condition that my six year old daughter Persephone faces on a daily basis. She is the most spirited, caring and determined person I’ve known and faces the physical, learning and emotional challenges that are part and parcel of living with NF with courage and grace.
Last week I had my place in the marathon officially confirmed to run for the Children’s Tumor Foundation (CTF) Endurance team. I’m planning on posting much, much, much more information regarding NF and why it so desperately needs more funding, research and your support – but in the meantime, please take a moment to read about what the CTF does for neurofibromatosis (NF) sufferers like Persephone. Our family is committed to finding a cure for NF and have worked closely with the CTF for years to fund research and find a cure for this debilitating genetic condition. Every donation makes a difference and every time our link or this post is shared, we increase awareness and knowledge of NF in the community. I’d love to hear from anyone who would like to work with me with event or fundraising ideas leading up to the marathon in November.
There are many thank yous and shout outs to get to on here and I’m looking forward to recognising and showing my gratitude to all the businesses and individuals who have already shown their support in a myriad of ways. I’m looking forward to sharing this journey with you all and raising awareness for NF.
5 Boro Mother 