Welcome to Hope for Hermione!

We will keep you updated on the latest developments and a day in the life of Hermione! 

24th July 2024,  

School's Out for the Summer !!

What a year it has been!

School can be tricky place and time for many children with SEN.  Hermione loves school and for her, this daily structure helps her to thrive!  She has made made friends at school and for us as her parents makes us so happy as it can be a lonely life without friends.  They have helped her grow in confidence, helped developed her speech and it melts my heart when she comes home and says that one of her friends have painted her nails as she proudly shows them off, or when she simply says her friends name when asked how her day was. 

There is of course her amazing teachers at school who provide her with a day that is filled with activities and helps to challenge her and develop her learning and development.

Working in a SEN school can certainly have its challenges, but having someone who understands you and has the patience to help you grow is invaluable!

Thank you to everyone who has played a role in Hermione's day at school, you mean more to us than you know!

Hope you all have a wonderful summer and much needed rest and relaxation!

A Summer of Fun!

Hermione has been on a Sheep hunt this week!  How many sheep have you spotted in Maidstone?

Dancing Queen!

Hermione loves to sing and dance!  She is very lucky to have a kind and understanding dance teacher who brings out the best in Hermione!  Molly and Carolyn have encouraged Hermione to learn her dance routines in an environment that is inclusive and supports Hermione.  This summer MMD had their first dance show case at the Glass box theatre.  We were unsure how Hermione was going to react or if she would even go on stage! Well she surprised all of us and there wasn't a dry eye in the house!

Thank you to everyone at MMD your love and support is always appreciated and you have helped Hermione to grow in confidence and shine like she does!

Try Something New!

Navigating life with BPAN presents significant challenges for many individuals, often referred to as 'Bpanners.' Mobility is a common struggle, necessitating support for walking. Speech impairment is prevalent, and constipation frequently complicates their health. Seizures, muscle spasms, and dystonia are also part of the daily battles, alongside vision impairment and cognitive delays.

For those of us in good health, it's easy to overlook the ease with which we perform daily tasks.

Hermione's journey with BPAN began with her diagnosis in May 2024, a condition I was completely unfamiliar with due to its rarity and complexity.

I made a vow to Hermione: as long as she can dance and sing, we'll join her with equal enthusiasm.

This commitment has inspired her to attempt everything, with our full support at every turn. The inevitable bumps and bruises are not setbacks but proof of her determination and effort.

Together, we've experienced a spectrum of emotions, from laughter to tears, and moments that have tested our patience. Yet, despite the challenges, we cherish these times and would willingly relive most of them.

Happy Birthday to Me! 

In our family, birthdays are the pinnacle of celebration!

Weeks before the big day, we dive into party planning, and as the date approaches, the excitement mounts until we're singing 'Happy Birthday' daily!

These occasions are more than just fun; they're a tribute to a wonderful individual whose love and joy light up any room.

Each birthday marks the milestones of growth and change, especially for Hermione. From her early days as a shy baby to now, where she radiates happiness and confidence, dancing away and bidding farewell with a wave, secure in her activities and friendships.

This year's festivities were extra special, featuring a nail salon visit and a bowling party surrounded by her dearest friends!

We're deeply grateful for all the heartfelt birthday messages, cards, and calls. Each one of you holds a special place in our hearts!

Beach Day Fun!!

The beach is universally adored, isn't it?

There's nothing quite like a day spent by the shore, which ranks high on our list of enjoyable activities!

From indulging in ice cream, kicking around a football, to building sandcastles and hopping on amusement rides - these are the moments that craft the fondest memories.

Friendships make the World a better place!

Childhood memories are often cherished, especially those created with friends. These early friendships lay the groundwork for our adult relationships. It's not about the size of the group, but rather the strength of the connections, the unspoken rules of friendship, the shared laughter, and the formation of close-knit bonds. Such friendships, often formed in the most surprising places, are the threads that weave the fabric of our lives and make the world a more joyful place.

Laughter is good for the Soul!

Life's daily hustle often makes us forget to pause and savor the world around us, along with the company of friends and family. This Saturday, Hermione reveled in her day, zipping around the skate park on her new scooter, embarking on a sheep hunt with Nicki and AJ, followed by a leisurely picnic.

The day's surprises didn't end there; upon returning home, Hermione was ecstatic to find Gareth, a cherished friend from my youth, waiting to greet her. It's heartwarming to see such a strong connection between them, a testament to the enduring family ties that bridge even the vastest oceans.

Our escapades with Gareth took us on a jaunt to the local park, accompanied by Hermione and Milo. True to form, Milo made a beeline for the pond, mistaking it for canine paradise. The ensuing rescue operation—meant for Declan, who was actually fishing—resulted in a tangled mess of dog leash, with Hermione inadvertently taking a dip!

The day's unexpected turn of events, with Hermione and Milo as our unintended 'catches,' prompted a unanimous decision to head home.

These spontaneous, laughter-filled moments are the ones that linger in memory, the very essence of joy. So, here's to embracing the chaos—because sometimes, it's the unplanned adventures that bring the most laughter.

An early Morning, long drive, but Summer Holidays are worth it all!

Thursday morning marked an exceptionally early start for the boat trip from Dover to Calais, followed by a seven-hour car journey. Upon arrival, we were greeted with the delightful surprise of swimming pools, water slides, and a beach to unwind on before the new school year. Hermione reveled in sliding down the regular straight slides, and her races with Declan were filled with equal parts excitement and laughter. However, this joy was brief as Declan was set on convincing Hermione to try the larger slide, complete with twists and turns.

Once Hermione conquered the thrill of the adventure, there was no holding her back. She spent the entire day ascending and descending the slide, eventually gaining the confidence to go solo.

The pool provided a tranquil and equally enjoyable experience, especially as Hermione has been honing her swimming skills.

More adventures are on the horizon—stay tuned!

I Scream, You Scream, We all Scream for Ice Cream!

Sometimes all you need in life is a bit of warm sunshine , delicious ice cream and friends to make the world go round!

Let the World know about BPAN!

Did you hear about my Mum's interview on Made in Kent Radio?

Here it is if you missed it! 

Don't forget to share it!

Back to School!

What a Summer we have had this year. Normally the thought of 6 weeks holiday, like many other parents , fills us with dread of having to entertain the kids with endless activities and the never ending supply of feeding them too.

This time it has flown by and although it is good to get back into a familiar routine, We do miss the lazy or slow starts!

But for now, whilst we reminisce about the fabulous summer, amazing memories and never ending laughs,  its time to settle into a new year with new challenges, more highs and lows, but look forward to everything that we can achieve this year.

Good luck to everyone starting school this year, whether it’s your first day of school or your first day of your final year, we wish you all the best!

Where does the time go?

I know that we all ask ourselves this on a daily basis and it really does feel like the older we get, the faster time does fly.  But here were, 7 weeks after starting the Autumn term, we find ourselves back on holiday for mid term break.  As I look back it’s hard to think that for the first time at the begining of September I found myself travelling alone to Houston to a very special persons wedding.  

This had really reminded me of how time and space can come and go, but those close bonds we create really are the ties that bind us in every way.  It’s the family bonds that bind us whether we are blood relatives or bonds that have been created by love, honour, courage and bravery and to never forget those who have created those bonds with us.

For Hermione, she had to ‘break’ a bond, as this was the first time that Hermione has been away from for more than 24 hours.  She had realise that no matter what happens, I will still return, and YES there are other very special peeps in her life to help her out along the way.  It’s safe to say, everyone survived.

Being in Houston also gave me the opportunity to meet Amber who is President of NBIA disorders, an organisation who also aims to support families living with BPAN and other NBIA disorders.  It was great to meet Amber, so watch this space as there will be more to come.

Hermione has enjoyed her weekends with AJ scootering in skate parks and brushing up on those tricks (anything to help keep those muscles moving is good), dancing, watching football from the sidelines as Declan has been playing lots of football lately.

We have been planning our Charity ball which is being held at the Tudor Park Hotel, in Maidstone on the 30th November, we are very excited about it and looking forward to an evening filled with fun ! We do still have tickets available !

Half term has been filled with Adventure Kidz soft play, Shrek Adventures and Trick or Treating!  I think it is safe to say, it is time to go back to school,  so mum can have a rest!

The joys of Hospital visits!

One thing that Hermione truly struggles with is ear infections. These can be excruciatingly painful, but due to her exceptionally high pain threshold, we often fail to recognise the extent of her discomfort until it’s too late, and blood starts oozing from her ears. Despite this, she remains resilient and never complains about her pain.

Recently, we had an appointment with her ENT specialist at Evelina, one of the most esteemed doctors in Hermione’s life. She consistently displays kindness and gentleness, and she’s one of the doctors Hermione has come to trust. This is a significant milestone for Hermione, considering her nonverbal nature and the challenges of communicating her feelings to various doctors.

During her last appointment, we decided to remove the grommets that Hermione has been wearing. This procedure, which would normally take only five minutes, necessitated her admission to the ward. Kathy, as always, accompanied us for another eventful day, which included abstaining from food and experiencing the familiar hunger pangs whilst we waited for Hermione to go to theatre.  Once she had gone down, Kathy & I managed to sneak in a quick bite to eat and a well needed coffee before tapping up M & S for their stash of chocolate mousse, berry trifle, pizza and chocolate biscuits to put the hunger monster away.

Fortunately, everything went smoothly without any complications. Hermione was discharged the same evening, although Dr. Lilly had to perform a final bedside check before she could leave.

We extend our heartfelt gratitude to the exceptional team at Evelina for their unwavering dedication and care. 

Hope for Hermione Charity Ball

On Saturday  the 30th November, we hosted our first annual Ball.  with such a busy time of the year, who would host an inaugural ball to celebrate the official launch of Hope for Hermione?  Yep that would be US! 

However as nervous as we all were, we pulled it off and with a special thank you to our host Matt from Made in Kent Radio, it was a resounding success!

Many of our guests had never heard of BPAN before, so for them, it was an interesting evening finding out about BPAN, but it was also an evening to celebrate Hermione in all that she has achieved in her short life.  This is just the beginning of a very loving road for  her but with the support from everyone who attended the ball, those who have continued to donate through our Just Giving page, Hermione and all those living with BPAN, will continue to have hope of living a better quality of life by raising awareness and supporting the research of finding a cure for BPAN!

A huge thank you goes to each and everyone who supported us on the evening of our ball to raise awareness of BPAN, your donations  are greatly appreciated!

We would also like to thank our sponsors for their kind donations of balloons and flowers, the room looked absolutely beautiful and not to forget all those that had donated raffle prizes and action prizes!

Thank you again to Matt from Made in Kent Radio, your support has been amazing!

‘Tis the Season!

Well, this Christmas season crept up on us and feels like it was over in a blink of an eye!

We have lots of Christmas activities going on during the month, including St Peter’s Bearsted Catholic Church hosting a Christmas Quiz night and raising a whopping £340.00 which they have kindly ‘donated to ‘Hope for Hermione”. Thank you for your kind donation and generosity!  It is greatly appreciated. The quiz evening was great fun and a resounding success with our table winning the quiz (we promise, it was not fixed!) We definitely look forward to the next one!

Hermione had her traditional Christmas show at school, which is always a joy to watch as each child joins in with the show in the way that they know best.  Her school is amazing and always go to extra lengths to ensure that each child experiences the magic of Christmas at this special time of the year.  We would like to say a special thank you each and everyone member of staff at her school, and wish you all a Merry Christmas !

With our schools finishing the term quite late this year, we only had a few days to get ready for Christmas, and by some Christmas miracle we managed to get everything sorted.  

We had friends round on Christmas Eve which was great fun just to relax after a busy few days and finally sign off to enjoy the holiday season.

Christmas day was relaxed and very quiet this year!  We missed out friends this year who have spent the last 3 Christmas’s with us and abandoned us for sunnier weather  and enjoyed their holiday season with their families in South Africa.

Christmas morning always has a special something about it, the magic of Christmas still lives on in our house and this year, Hermione actually asked for a baby under the tree.  It was bitter sweet as every child crates their Christmas list to Father Christmas and for a child who has limited speech it was a beautiful thing to hear.  She even spoke about ‘Santa Claus’.  To us, this is the Christmas magic that we all experienced as children, what magical words - then to top it off, on Christmas morning, she couldn’t stop saying ‘ Merry Christmas to everyone, these are the special moments, this is the magic.

Kathy and I had been chatting on Christmas Eve and wondered what Christmas looks like for Hermione in her world, I guess we know now that it consists of babies under the tree and a special kind of magic!

Merry Christmas!  We hope you have a wonderful time celebrating a magical time of the Year!

 Baby it’s Cold Outside!!

Stepping onto the ice for the first time is a moment of both excitement and apprehension, especially for someone like Hermione, who faces the challenges of BPAN.

When my friend suggested we go ice skating with our families on Sunday, there were various emotions running through my mind! Was she crazy or was I even crazier to agreeing to go Ice skating!!  

But despite the uncertainties  of both the unknown of how Hermione was going to react to wearing strange fitting skates that she has never worn, to having to very quickly learn to walk in a completely different way on ice and physical struggles she may encounter, Hermione's courage shines through.

The wobbly start, the fear of falling, the uncertainty in each glide—none of it stops her from embracing the experience. With every cautious step, she not only conquers the ice but also proves how brave she is in the face of adversity.

For someone with BPAN, where coordination and balance can be a daily challenge, skating isn't just a hobby—it's a triumph.

Her willingness to venture into new experiences, to persevere through discomfort and self-doubt, is a testament to her remarkable resilience and unwavering determination and I so so proud of her.  We often take for granted the things that we can do on a daily basis and forget what it takes for those who have severe disabilities.

In every glide and every shaky turn, Hermione is not just skating; she's rewriting the narrative of what it means to face challenges head-on and continue moving forward with unwavering strength.

The laughter and sheer enjoyment that she had ice skating for the first time are the moments that last a lifetime and the memories with friends make it all worthwhile!