Ola Gotkowska

Ola Gotkowska

Ola's fundraising campaign

Supporting

Total raised so far£0.00

Total plus Gift Aid: £0.00

Target£0.00

Raised offline: £0.00

My story

[p][b]UPDATE: we have been so grateful and touched to have reached our original target so quickly. This enables Ola to take Edaravone for one year and she has already started this treatment. [/b][/p][p][b]However, her needs are changing every month and we are now raising money for the second phase of our campaign: to pay for medication into Year 2 and to buy equipment that will enhance Ola’s quality of life now.[/b][/p][p]This time last year, Ola was in South Korea. She was a guest speaker at a publishing conference in Paju, near Seoul. She addressed an audience of more than 100 about selling rights, the career she loved [url=https://www.youtube.com/watch?v=pEkB04Q6yxU](you can see her presentation here).[/url] After the conference, she took 23kg of children’s books to a series of meetings with publishers in Seoul.[/p][p]Ola had already begun to notice that she didn’t quite have the strength in her limbs that she’d previously had. She’d had to stop playing tennis with George, her partner of 8 years; she struggled to type accurately; and to knit with her usual skill and pace. She was worried. Doctors initially suggested it was repetitive strain injury.[/p][p]Just seven months later, in April of 2018, Ola was diagnosed with Motor Neurone Disease. This is a devastating condition affecting all of the voluntary muscles in the body. It’s progressive and currently incurable.[/p][p][img]https://lh3.googleusercontent.com/cVA9HJSxr4r_4eFBx3HJglcy63dPiB4QDwzSTQ3IkeVZVrjmhq8PXQxRF5EtkjHOoJCPJSBRyKEWTDecZDq1jgwnYmQekQy_yYtQ63XasHHScBvOeAFjtlHrhnGPxCyqsgfJFbqWNvR_mgnsvNGQHvtKNUpdmpAjpdeotmeHxP1yxxtrwoRS6wTkZeN_xGmgpUMSntBQZAjX2vaYLBPj8Q01iQ9XWpbKaw5k86Z7SErKn17a8u10EY4tlJSJ_X_eoqgj4yo-6RaGi2kKpWNEJEDYrxbb2ykUFvMLKRpLm4_Iqi6RxnExfE02A-ofIB2ISJeYy9oEoJ3OB6u42vXdWNyD6BQM9NAgg0fVcH2oLguhYYu-ClwdL1F0_9gRsLPHJSZR_rY-ixE4Wxs9_TiuxBuRs_Bj_4_xHGir6Ld47vbuVL-Zgqa23wh-qC2wmV1JeVUPmFve--fZubjUm8LlfR0K9KFMgcWPoKYDY8ef3n4wHLSiILUQAXscOeDp2Y-V-sHjHLXFYm_5XxVYVSuOWrRTt70-vz2loZ_dlf68Su8uzuS-dilRBy-2LtWoaEtQcs3pKOla_47dFG0SCDc67GqOP2zW3LYWg_vwOqks-KBuPDCsRGyRoXGLtfvebiajVoVgck4N3yzdhI7eUzGEPEH-iAar5gUyWDF4KxiWQbdnKMzfpPFfEOUe=w799-h1065-no[/img][/p][p][img][/img]Today, Ola cannot walk unaided, her grip is weak, and her speech is slurred. Within the space of 18 months, she has gone from being an active and healthy 32 year-old to losing much of her independence and many of the things that she enjoyed.[/p][p]There have naturally been many tears and low points in dealing with this new reality. Despite this, Ola remains so resilient: her sense of humour and strength of character are an inspiration to everyone who comes into contact with her. She still plays with her young nephew, Kamil; still works at her beloved company, Nosy Crow; and still obsesses over dogs.[/p][p]One of the main sources of hope for Ola has been the incredible, rallying support of everyone around her: her family in Poland, George and his family, her friends, her colleagues at Nosy Crow, and her wide network of friends and acquaintances around the world in the publishing industry. Ola is so grateful to have you all by her side.[/p][p]The radical new drugs being developed to treat this degenerative illness provide another glimmer of hope. There appears to be a mini-revolution in cell and gene therapies, some of which are nearing the end of their clinical trials. Ola’s neurologist says the rate of scientific discovery is ‘exponential’ - and that the arc of improvement in HIV treatment in the ‘90s, for example, could be repeated with MND today. [/p][p]One medicine to recently emerge from Japan - called Edaravone - has been clinically proven to slow functional decline in patients with MND by a third on average. That may sound modest but, combined with Ola’s current drug regimen, we hope this could have a significant impact in allaying the condition and retaining her strength.[/p][p]Frustratingly, Edaravone is not available on the British healthcare system, and costs £19,000 per year to buy. In addition to her current drugs, therapies and supplements (listed below), she faces medical costs of £31,000 per year.[/p][p][b]We are therefore kindly asking all of you who know Ola to consider helping her to fund these treatments to fight back this terrible illness. These drugs can help preserve her mobility, dexterity and voice - and there really is no greater gift than that.[/b][/p][p]Thank you![/p][p][br][/p][p][b][u]Yearly costs[/u][/b][/p][p]Edaravone - £19,000[/p][p]Private physiotherapy - £6000[/p][p]Methylcobalamin B12 injections - £2160[/p][p]CBD Oil - £1200[/p][p]L-Serine - £1200[/p][p]Nuedexta - £720[/p][p]Theracurmin - £670[/p][p]Additional supplies - Saline bags (£600); Cannulae (£180); Overhead stand (£80); Cod liver oil (£60); Magnesium (£60); Low dose Naltrexone (£30); Vitamin D (£20); Vitamin B6 (£20) [/p][p][b]Total: £31000[/b][/p][p]If we are fortunate enough to raise more money than Ola requires for the coming year, then we will place this money into an account to fund her ongoing future medication and care needs and, beyond this, donate to charities associated with MND as well as The Book Trade charity should the funds no longer be required by Ola.[/p][p][i]The Book Trade Charity (BTBS), established 1837, is the trade’s own welfare charity, offering help to anyone who has worked in the trade (employed, self-employed or freelance) in a range of roles across publishing, distribution and bookselling and who has a problem, whether personal, financial or health related. The Charity offers direct financial assistance to individuals in need through its Grants programme, giving over two hundred thousand pounds in 2017 and subsidised housing for some forty people at Kings Langley in Hertfordshire and thirty people at Whetstone in London. We have recently launched new initiatives to support young people entering the trade and undertaking internships. BTBS helps around 250 people a year, in circumstances which include disability, long-term illness, redundancy, debt including rent arrears, poverty and carer situations.[/i][/p]
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Event

Personal Challenge Date

06 Oct 2018

Supporters


Apr 15, 2021

Anonymous


Apr 14, 2021

Anonymous

I love dogs and kids too...we're a kindred spirit, how could I not donate?! I can tell you have an indomitable spirit, you'll get better. Hope this goes in some miniscule way to help you along the way. I'll keep up to date with your recovery! A big hug!

£30.00

plus £7.50 Gift Aid


Mar 5, 2021

Stephen Lotinga

Hi Ola, it’s taken me far too long to find this page but hope it helps.


Jan 18, 2021

Anonymous

With love xx

£100.00

plus £25.00 Gift Aid


Jan 18, 2021

Steven Lenton

Happy 10th Nosy Crow birthday - I hope this can help XXX

£100.00

plus £25.00 Gift Aid


Oct 20, 2020

Craig

It's not much but we hope that it will a difference, no matter how small. With love and good wishes from my daughters and I

£30.00

plus £7.50 Gift Aid


Sep 2, 2020

Anonymous

Lots of love to you and George love Kate, Rich and Ben xxx

£50.00

plus £12.50 Gift Aid


Aug 25, 2020

Anonymous

£10.00

plus £2.50 Gift Aid


Mar 5, 2020

Mushi Jenner

Here’s a tiny contribution from Mushi and Peter Jenner. Sending love and light to you and George.

£20.00

plus £5.00 Gift Aid


Dec 3, 2019

Ciotka Ewa M.

£170.00

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