Our album:
Please keep sending your photos to us at fundraising4me@gmail.com to add to our album.
We've been sent a good variety of photos and details, thank you to everyone who has taken part to raise awareness so far. When it came to judging the competition, we looked to Invest in ME to choose the winning photo. While it was agreed there were many good entries, and several were very strong contenders, it was unanimously decided by Invest in ME that.. the winner should be.. the Mawer family!
Congratulations to Tanya, Tara, Dave, Keisha, Tasha!
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| Tanya (Mum), Tara (11), Dave (dad), Keisha (oldest sister aged 14) and Tasha (middle child aged 13). |
Tanya Mawer sent the following response to us on hearing of the competition result:
"Hi my name's Tanya (42) mum to Tara (11) who was diagnosed with CFS in November 2010. Thank you all so much for voting for us and choosing our family group photo as the winner – we are all extremely thrilled and feel very honoured to win the photo competition, I would like you to all know the news has put a lovely big smile on Tara's face.
Prior to falling ill Tara was extremely active (almost to the point of hyperactive!) she did tap and modern dance and musical theatre and loved to sing. We used to tease her as she used to sing instead of talk and dance everywhere instead of walk. Sadly, she's now had to give up on all of those activities.
I feel we are very lucky, and think all in all we have a great team behind us at our local Children’s hospital: -
- Consultants Senior Registrar (we have never had an appointment with the actual consultant),
- Physio – who initially wanted us to do progressive exercise – which we tried and stopped after 4 days as it made Tara worse, so now we do a half hour hydrotherapy session per week instead,
- OT – who runs the weekly hour long “rehab group” with other CFS children,
- Hospital school teacher – who was Tara’s only teacher for the past year and works from a room on one of the Children’s wards
- Clinical Psychologist – who is trying to help Tara come to terms with her illness.
All of whom are brilliant, though not very forthcoming with information – we found out about virtual school via TYMES Trust* and feel that the medical profession only want to push Tara back into “normal” routines, environments and school without appreciating fully that if she were able to do that – she would! Tara has chronic back ache, that we treat with wheat bags, heat gel, calpol and nurofen (our one off prescription of codeine now has gone), we recently stumbled upon a “pain be gone” pen at our local chemists which we trialled overnight and then bought the next day – it works sort of like a tens machine and is helping Tara to become a little more comfortable with her back, although it doesn’t entirely remove the pain as it stubbornly refuses to go. She also suffers with nausea all the time too, we're onto our second anti-sickness drug which we give her three times a day with her meals, in an effort to find something to relieve the nausea for her – and hurrah! It’s working (but shhhhh don’t tempt fate). Other than that she also suffers from headaches, sore throats, joint and muscle pains, burning eyes, pins and needles, swollen lymph glands in her neck, stomach pains, noise sensitivity (she wears ear defenders when I hoover or use the hair dryer etc - only certain sounds seem to upset her, not all noises) and of course tiredness. She finds being in large noisy places such as shopping centres and schools too noisy and too exhausting, social interaction on a large scale is too much for her.
We're currently looking into different schooling options for Tara, as we tried unsuccessfully to get her back to school by sending her for the first two lessons every day. This gradually wore her out ending in a relapse which lasted a month. The Registrar at our recent meeting seems to think the Nisai Virtual academy route is a great idea, so we are pursuing that and trying to get the school to agree to fund it. At this moment in time the school are not agreeable to funding virtual school, although we’re still doggedly negotiating options with them. We have Tara back at her “mainstream” school for one Maths lesson on Mondays, Tuesdays and Wednesday. She also attends OT Group for an hour on a Thursday and Hydrotherapy for half hour on a Friday. Unfortunately, for the time being, this is her limit and so anything extra (such as virtual school) would be too much right now. We are in the process of applying for a Blue Badge (fingers crossed we get it) and taking everything a day at a time.
As a family we are battling with the ups and downs this illness brings. During May this year, feeling frustrated and useless we decided to raise funds for the TYMES Trust* and as a family comprising of myself, Tara (who did it in the wheelchair), Dave (dad), Keisha (oldest sister aged 14) and Tasha (middle child aged 13), and Taras best friend Abby, we recently completed a 5 mile sponsored walk and successfully achieved a total of £607.06, which was fantastic.
I have attached a photo of myself and Tara (on a good day) and the family on the day of our sponsored walk.
If you wish to contact me my email address is: tanyamawer@hotmail.com I am happy for my email address to be shown, if anyone else in the same boat wants to get in touch - it's good to support and help each other wherever possible.
Whatever else you do, keep smiling
Best regards
Tanya and the rest of the Mawer family"
In a very generous twist, Tara has chosen to donate her prize to a raffle to raise funds for Invest in ME. Such a selfless and positive thing to do, Tara is clearly determined to make a difference to others, despite being very unwell herself. We wish Tara and her family all the very best and are touched to have helped brighten their day with this news.
*TYMES Trust - The Young ME Sufferers Trust - is the longest-running UK charity for children and young people with myalgic encephalomyelitis and won the Queen's Award for its voluntary services in 2010. Executive Director Jane Colby, an ex-headteacher with personal experience of ME, kindly commented in our Guestbook when our campaign first launched in July:
"Quality biomedical research will ensure that people with ME are taken seriously. We want to see the work of Dr John Chia on enteroviruses replicated in the UK and further work on enteroviruses funded. Any centre that can do that gets our vote."
Thank you to everyone who sent in their photos and to all our supporters for raising awareness and funds for Invest in ME and the planned research centre.
Please keep sending us your photos at fundraising4me@gmail.com. We wish to build on the success of this competition and will be selecting a further photo each month to be highlighted on the LDIFME blog. All photos sent to us by midnight November 30th will be eligible for the Photo of the Month for November.
