Elsie-Rose & Friends Foundation

Elsie-Rose


Recently I've been writing a number of reports about events that have centred around Mark Little, his kayak adventure (to be continued in approximately 10 days time!), and raising money for the Elsie-Rose & Friends Foundation (Crowdfunding).

Young local character Elsie-Rose, and this 4 year-old local lass certainly is a great character, was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 in September 2014, a condition that causes severe muscle weakness and results in problems with movement, eating, breathing and swallowing. Without intervention, sadly, most children with SMA Type 1 die within the first 2 years of life. However, the cheerful and resilient Elsie-Rose strives to carry on enjoying life just like any other 4 year-old child, despite all the complications she just keeps on smiling!

Elsie-Rose angling recently

Because many of the expenses encountered supporting children with SMA Type 1 are not provided for by the NHS, Social Services or the Department of Health, the Elsie-Rose & Friends Foundation was set up to support families with disabled, sick and terminally ill children. Indeed, my respect and warm regards go out to Elsie-Rose's mother, family and friends, and Elsie-Rose herself, and how they cope with the myriad of complications involved in their lives.

If you would like to know more about Elsie-Rose and the Elsie-Rose & Friends Foundation, and campaigns they are involved in, please go to their facebook page or twitter page. If you would like more information about Spinal Muscular Atrophy Type 1 please go to the Spinal Muscular Atrophy Support UK website.

Elsie-Rose & Friends: A Marathon in a Kayak!

Elsie-Rose

Well, it's getting very close now for Mark Little and his team, who will be undertaking the equivalent of a marathon, but using their arms rather than their legs, when they kayak across the English Channel from Dungeness to Boulogne this coming week, probably on Tuesday or Wednesday if the forecast stays true. As I've said before, this will be in support of Elsie-Rose and the Elsie-Rose & Friends Foundation. 

Local lass Elsie-Rose was diagnosed with Type I SMA in September 2014, a condition that causes severe muscle weakness, and results in problems moving, eating, breathing and swallowing. Without intervention, most children with Type I SMA die within the first 2 years of life, sadly, however, the cheerful and resilient Elsie-Rose strives to carry on and enjoy life just like any other young 4 year-old, despite fractured limbs and many other complications, and she keeps on smiling! 

Because many of the expenses involved in supporting children with Type I SMA are not provided by the Department of Health or NHS, the Elsie-Rose & Friends Foundation was set up to help provide help and financial support to families with disabled, sick, and terminally ill children. After meeting Elsie-Rose and her family, Mark and his team decided to kayak across the English Channel with the aim of raising money for Elsie-Rose and the Foundation.

Mark Training

Before setting off to France, indeed, on this Monday coming (20th August), from 3.30 pm at the Dolphin Inn in Rock-a-Nore Road, Hastings (opposite the fish market, fish huts and RX134 Stacey Marie Fishermen's Museum outdoor exhibit), there will be a charity raffle in support of this fundraising. 

Kayak IPA

In addition, 2 breweries have already contributed a firkin (72 pints) of ale each, and all the proceeds from their sale will go towards the Elsie-Rose & Friends Foundation (many thanks to Wantsum and Marsdens breweries), and with the likelihood of another 2 firkins in the metaphorical pipeline! Watch out for the pumpclip in the image above.

To make contributions towards supporting this brave young girl and others with similar problems, as many local people and businesses already have done, many thanks, please make a donation via Crowdfunding, or visit the Dolphin Inn and make a pledge to support this Kayak Marathon, or put something in the collection box on the bar please. Indeed, all contributions will be very gratefully received, many thanks!

If you wish to know more about Elsie-Rose, the Elsie-Rose & Friends Foundation and their campaign, you can go to their facebook page or twitter page. If you would like more details about SMA Type 1, go to the Spinal Muscular Atrophy Support UK website. 

Good luck for Tuesday, and best wishes to Elsie-Rose, her family and friends!

Planet Hastings Crazy Golf & British Championships 2018 AND

OK, a library photograph! 

If you want to play on the Pirate Golf, one of the 3 courses at Hastings Adventure Golf, this weekend (website), you may well have a problem, no, not snowfall! That's a library image of mine (pretty picture), however, there may well be some light rainfall this afternoon and tomorrow (Sunday) morning... Oh yes, back to the point, this weekend Hastings hosts the British Championships 2018 (website), so expect congestion or, more likely, the Pirate Golf course will be closed to non-competitors!

Talking about Planet Hastings Crazy Golf Club reminds me of the recent generous donation they gave to Mark Little, contributing towards his 4-person team and their crossing the English Channel by kayak challenge in 3 months time (August). They will be travelling from Dungeness to Boulogne (Mark et al, not the 2 Davids and Maz) in aid of raising funds for the Elsie-Rose & Friends Foundation.

Local lass, young Elsie-Rose, was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 in September 2014, a condition that causes severe muscle weakness and results in problems with moving, swallowing, consequently eating, and breathing. Without appropriate intervention, most children with SMA Type 1 die within the first 2 years of their lives sadly. Thankfully, the resilient Elsie-Rose is determined to carry on and enjoy her family life just like other young children of her age!

Elsie-Rose

Because many of the expenses involved in supporting children with SMA Type 1 are not provided by the Department of Health, NHS, or local services, the Elsie-Rose & Friends Foundation was set up to provide help and financial support to families with disabled, sick and terminally ill children. After meeting Elsie-Rose and her family, Mark and his team decided that they would raise funds for Elsie-Rose and the Elsie-Rose & Friends Foundation by kayaking across the English Channel.

If you would like to know more about the Elsie-Rose & Friends Foundation you can go to their facebook page or twitter page. If you would like to read more information about SMA Type 1, go to the Spinal Muscular Atrophy Support UK website. 

If you would like to make a contribution towards supporting this courageous wee lass and the Elsie-Rose & Friends Foundation please make a donation via Crowdfunding. Or you could visit The Dolphin Inn, 11-12 Rock-a-Nore Road, Hastings TN34 3DW, and make a pledge to support the team's kayak challenge, and/or add to the collection box on the bar, indeed, all contributions would be very much appreciated, many thanks!