Imogen was very proud this morning, going to school nursery for her last day of term as purple as can be. Her school are celebrating the end of term by holding a wear purple day for JIA
Hello world. Yes I know it’s been far, far too long and I do feel terrible that I have lost my blogging mojo but I’m back, it’s back and we are back (I hope!!).
So where have we been and what have we been up to I hear you ask….
Well December and Christmas 2018 was the craziest yet. We had family visiting from Australia so we tried to spend us much time together as possible. We managed to squeeze in a trip to Hyde Park Winter Wonderland with Nanny and Grandad Dylan, a Visit to see Santa at Thursford with Imogen’s best friend Lucy and we also went to see Disney on Ice in the New Year again with Lucy and her family. Needless to say we had a pretty exhausting but magical Christmas and New Year.
So far 2019 has been a little challenging. In so many ways things have moved forward in a positive way, in terms of Imogen’s treatment response. Her eyes have responded very well to the drug Humira and she has recently been able to stop the steroid eye drops which has been fabulous, she still can’t believe she doesn’t need them bless her.
However we are having a lot of other issues to battle with, she has been struggling with nausea and fatigue following her injection treatments on a Friday, meaning some weekends all she wants to do is be at home in her ‘safe place’ and struggles to eat. Although with some help from the hospital we have adjusted how and when she takes her folic acid and this seems to be helping. But she is also struggling with her emotions and anger, which I can appreciate may well be linked to what she is going through, so we are keeping an eye on this.
Anyway it’s good to be back and I will have more to tell you soon enough I’m sure.
A while ago after doing our family fun day back in August our family friend Malcolm suggested holding an Imogen’s Wish Quiz Night. After advertising the event and slowly collating teams, Friday 23rd November we had our Quiz night and what a fab night it was.
Firstly a HUGE thank you to Malcolm who worked hard preparing and hosting the 10 rounds, which I have to say were brilliant not just reading questions but interactive with pictures on the screen, ding bat round and also the final round ‘don’t show Malcolm your Molars’ which if you have watched the TV show Celebrity Juice, you will know what I’m talking about. But I also extend that thank you to the rest of Malcolm’s family who gave up their night to be there helping out, setting up, working the technology, collecting quiz sheets, scoring rounds and more, you guys are fab and you already know how much we love you all 😘
Also a big thank you to Lowestoft & Yarmouth Rugby Club who very kindly let us use their room free of charge and not only did they have a team but they opened up the bar for our event and were so kind and welcoming to us all.
From sales of our quiz team tickets, charity bands sold on the night and general donations we raised a fabulous £150, but it doesn’t stop there. The Rugby Club and Malcolm did a half time collection at a recent game and raised another £132 so in total £282 how fantastic is that!!! Thank you to everyone who donated.
Needless to say everyone had a fantastic night full of laughter and I hope we will be able to arrange another quiz night for 2019, i have had a few enquiries already.
One final Thank You to all who came along to the quiz night and have supported our journey, keep spreading the word, tell others to visit our b
log and Facebook page to see what we are up to and how Imogen is doing.
Well what a surreal experience I had last week. On Thursday 22nd November I attended a reception at 10 Downing Street.
The whole thing came about a couple of weeks previous when I received an invitation via email. The first line said ‘The Prime Minister requests the pleasure of the company of Mrs Hannah Gotts at a Reception to celebrate civil society in Berkshire’. My first thought was that it was spam so I therefore laughed it off and ignored it. It wasn’t until a later date when speaking to someone at NRAS and telling then about my odd email that they confirmed it was infact a real invitation. As you can imagine I was rather shocked but absolutely delighted to think that I had been invited to such an event and retrieved the message as soon as I was able to. Luckily I had the date free and managed to arrange childcare and some reasonably priced train tickets. Hubby decided he would come along and keep me company on the train as he didn’t like the idea of me travelling back on my own late at night (I know bless him).
So last Thursday we set off from Norwich station to London Liverpool Street, First Class (only because it was £2pp more) which I have to say was a wonderful experience, and it was lovely for once to just sit down with a coffee and a film on the ipad and relax for a whole two hours.
The time went incredibly quick and before I knew it, it was time to make my way to No. 10. Now at this point I can say the nerves had started to kick in and the realisation of heading in there on my own, little did I know that one of the best things of that evening was about to happen, and that was meeting a lovely young woman, Rachael.
Rachael was 22 and just finished university when she was first diagnosed with Rheumatoid Arthritis and she could relate wholeheartedly to Imogen’s pain and our journey as a family coming to terms with the disease of JIA. I feel very blessed to have been introduced to such an inspirational, kind and positive person who honestly felt like a kindred spirit I had known for years. We enjoyed the whole adventure together from entering those gates, being security searched, and entering and exiting that iconic black door. Inside number 10 we met other charity volunteers for NRAS and other charities and it really was a moment I will remember forever. I must note that it was great to also meet in person Clare Jacklin and Matthew Bezzant from NRAS and again see Ailsa Bosworth (CEO at NRAS) who we met earlier this year when visiting their offices in Maidenhead.
Unfortunately we didn’t get to meet Theresa May that afternoon, as you can appreciate she had an awful lot on her plate with the Brexit negotiations. However her Husband Philip delivered a wonderful speech on her behalf and made his way around the room throughout the event.
Obviously we visited the Ladies room (because we will probably never again spend a penny in No. 10) and left……. well after a few selfie opportunities!!! Darren was waiting at the gate, bless him and apparently I was late leaving and he had been there in the freezing cold for nearly an hour….. opps!!! you know what us Woman are like when we get talking. With a little bit of time to kill before making our way to the train station, we grabbed a bite to eat and had a look around Leister Square, then set upon our journey home.
Thank you to NRAS and Number 10 Downing Street for having me as one of the guests at such a special event, recognising such amazing work of many different people.
Anyone who knows me well, knows I love to throw a kids party…… so what better excuse than Halloween 👻 so the weekend before Halloween, we held a friends and family party in aid of Imogen’s Wish, and what a party we had. I have been wanting to introduce Imogen to Halloween but in a very child friendly fashion. So what started off with plans to have Imogen’s best friend and cousins round for a little party at home, very quickly turned into a party with many of her family and friends at Lowestoft Deaf Centre (we have had family gatherings there previously). After weeks of planning and gathering supplies the week before Halloween had arrived and preparations were in full force. Redecorating our photo booth frame, carving pumpkins, making treats for my treat tree and lots and lots of baking….. not to mention sitting up until the early hour stitching hair rollers and cotton wool into old tights for Myah’s show-stopping Halloween costume 😂
After a rather stressful time setting up the centre with balloons, banners, giant spiders, gravestones, lights and pumpkins, the scene was finally set (thank you to a couple of early arrivals who helped me calm down and get the rest of the bits up in time 😘, it would appear I’m far too particular and have too many ambitious ideas 😆). The room looked great and the costumes were on just in time for our guests to arrive.
I must say I was overwhelmed by how many of our friends, new and old managed to join our family for this event, it made all the hard work worth while to see all the happy faces surrounding us. We had our good friend Simon, kind enough to host the disco for us and what a fantastic job he did. Dressed up in full Ghostbusters attire and showing us all the signature moves, he really got the room moving and we can’t thank him enough for his kindness. I’m not sure who enjoyed the dancing more the kiddies or the mummies 😉
There was lots to join in with from dancing, games and competitions including the ‘Best Pumpkin’ design and ‘Best Costume’. The afternoon was great and we hope that all those involved enjoyed it as much as we did. The party was free to attend but held in aid of Imogen’s Wish, so we were very pleased to find that we also raised just over £150 through donations on the day, a big thank you to everyone who came along and donated, decorated pumpkins and dressed up it really meant a lot.
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.
We also have our Winners to announce for our Imogen’s Wish Rocks competition.
Again I have not been involved in this part, however there’s so many beautiful ones.
Well done and again please contact us to arrange collection
Hannah & Imogen xx