Month: Oct 2018

A number of weeks ago I received a call from a lovely lady Ros from Parker Communications, alerting me to the fact that I had been nominated for a Stars of Lowestoft & Waveney Award. But not only had I been nominated, I had been selected by the judges as one of three finalists in the category ‘Community Champion of the Year’. To say I was surprised is an understatement, I didn’t even know about such awards at this point. And there I am being invited to attend the award ceremony as a finalist!!

So last Thursday (11th Oct) I turned up at The Hotel Victoria, with my Husband and Dad by my side for support, with absolutely no idea what to expect. The venue had been dressed beautifully for the ceremony and there were people everywhere from finalists, sponsors and judges to individuals presenting the awards. I must admit i felt a little nervous about it all, but I didn’t need to be. What a fabulous evening with an array of amazing, inspirational people. BBC radio Suffolk presenter Mark Murphy was compère for the evening and at the start of the ceremony I learned that this was the fourth year of the awards. How amazing I thought, all this to honour those who have been nominated and recognised as doing amazing things for their community and beyond but ask for nothing in return, all I could think is ‘do I really belong in a room with such individuals, what have I done that deserves this?!’

The various categories with their finalists were announced, with the winner being revealed from a gold envelope (Oscar style). There were a total of 13 trophies presented during the evening and I must say it really was a rollercoaster of emotions for those involved, hearing some phenomenal stories of courage, determination and success within the room. When my category appeared they had a lovely voiceover explaining who the finalists were and what we had been nominated for. Then the very worthy winners for our category were announced as the Volunteer Gardeners at Carlton Court. I was delighted for them, they are a lovely bunch of volunteers and do a fantastic job looking after a memory and sensory gardens for families living with dementia. As I say it was an honour to be in the room with such amazing people, something that I never would have dreamed I would be a part of, so just being there was the best prize for me. But to then be invited on the stage as one of the finalists and receive a beautiful award for this was a very proud moment.

To whomever nominated me, THANK YOU 🙏 I would love to know who you are!

There were so many fantastic finalists and winners with some truly touching moments including ‘Special Recognition Awards’ for Sue Willgoss and Nick Ayer’s. But I must say it was a magical moment to see Daniel Jillings not only win the ‘Young Person of the Year’ award but to also be awarded the well deserved ‘Overall Winner’ at the end of the night. Daniel has done some amazing work alongside his mum Ann and hearing dog Varley leading a campaign to have GCSE in British Sign Language. He really is an inspiration to us all.

To sum it all up……..

Those of you who know me well, know what a deep thinker I am and being involved in such an event has triggered a lot of thinking and reflection on our journey. Sitting at that ceremony listening to the various voiceover’s for nominees. In my case it covered Imogen’s diagnosis with JIA and how this inspired me to create my blog ‘Imogen’s Wish’ raising awareness of the condition and also supporting and communicating with other mums and families going through similar things. They also covered our work fundraising as Imogen’s Wish raising funds for JIA-at-NRAS including our charity event which we held at the Seagull Theatre back in August. The final word being ‘she is an inspiration’. I was beaming and holding back my happy tears, it suddenly hit me what I was there for and what we had achieved. It is right how they label theses awards, individuals including myself are driven to do all this without wanting recognition and wanting anything other than to bring support and good to others, so you don’t actually see what you have achieved. You do it because it becomes your drive and your passion and a natural part of your every day life.

I suddenly felt a great sense of pride to think how far we have come as a little family. Only a year ago riding this emotional rollercoaster from getting a diagnosis for Imogen, to managing her treatment and finding an output for all our anxieties and progressions through this journey in the way of my blog and our charity work. Not to mention the fantastic friends we have made along the way, individuals at NRAS, the local community who have supported us, local businesses, venues and organisations who again have supported our event in August. But mostly the other children and families (most of which have been so local to our community) who we have made contact with us and are going through similar things. They have said how much it has helped them to meet and speak to someone else going through the same things. That’s the rewarding part. I have formed friendships as has Imogen that will last a lifetime.

From something so sad and challenging has come such good. And that has taught me a lot. No matter how tough things can get at times you must realise what good you can achieve, from turning these negatives into positives comes great things.

All I can say is there is much more to come, this year is only the beginning.

you can read more about the Stars of Lowestoft and Waveney Awards and see photos from the event by clicking here.

Can you believe that it is exactly a year ago today that Imogen awoke, crying and unable to get out of bed in the morning.

In some ways it feels like only yesterday, but it also feels like she has been dealing with this for much longer. So to sit back and see how much she has come on over the past year both in herself as a 3 year old but also the treatment progress and her confidence living with the condition is just tremendous. She amazes us every day and although it is a hard journey at times I want her to always know that she is strong enough to deal with anything.

I know, I know…… this really isn’t good enough and not up to my usual standard of keeping in touch with the world. We had a hectic end to the summer and I naively thought that once Imogen was back at nursery life would slow down…..umm maybe not!!

Anyway we had a fabulous summer, the weather was great and we made some lovely memories with friends and family, not to mention our successful charity day in August.

At the end of July Imogen started her new treatment of Adalimumab (aka Humeria). This is in injection form and is administered every other Friday. We started off with the first two treatments at the hospital, she really didn’t like it but with the help of the fantastic Paediatric Rheumatology team at Jenny Lind Children’s Hospital it was over quick and life could resume to normal. We then decided to continue with the injections at home ourselves, we didn’t anticipate the anxiety that came with this decision and just thought she tolerates the other injection so well at home and that it would be better to be in a more relaxed, natural environment.

OH HOW WRONG WERE WE!!

A fortnight later, at home, out came the injections. She sat and had her Methotrexate injection first, no problems whatsoever and then she noticed the second box and FREAKED out. We were organised and calm and did everything by the book but she was hysterical, shouting, screaming and crying , it was near on impossible to restrain her enough to even do the injection. Finally with 3 grown adults we managed to get the job done and it’s was extremely distressing for all involved to see how traumatised she was by the whole experience. Later that day Imogen was lashing out, angry and not at all herself. She also wet herself during the afternoon, something that she hadn’t don’t for months. This went on for days with her behaviour uncontrollable and wetting herself up to 6 times in a day, something wasn’t right. In desperation I explained the situation to her Dr and Nurse at a routine appointment that luckily fell a week later and on discussion it all made sense…..

When you break it down she is three years old and already going through so much, all of which she has tolerated so well with such bravery. Then she has a new injection on top of all that which she is frightened of and has three of her closest people holding her down to do it, in her home which is her ‘safe place’ it’s just tipped her over the edge and is a step too far. Therefore we decided it would be best that we administer this new treatment in hospital by a nurse specialist for the coming months to try and separate the two where possible. We have therefore been doing this for the past few treatments and it’s going much better. She is still terrified and as soon as she sets eyes on the injection packaging she freaks out, but we have got a very quick and discreet routine set up now with the help of the nurse specialists, it’s over quick and she gets a sticker for her bravery tin, so fingers crossed it continues this way going forward.

The treatment seems to be going well and we recently met with the Drs who are pleased with how her joints are doing at this point in time. Also a review with her Ophthalmologist last week was very positive, showing that the eye inflammation has improved so fingers crossed this is the Humeria taking hold. Also the eye pressure is nicely under control with the relevant drops. Now he explained how we need to slowly wean her eyes off the steroid drops to see if they can cope well without. We have everything crossed for this to be the case and therefore show that Humeria will be enough alongside the methotrexate to control the disease and hopefully head towards the road to remission.

Fingers crossed 🤞 we will keep you posted.