Posts By Deborah & James Alford

Fun in the Forest

Isabella, Deborah, James and Auntie Bev


Recently, four very special ladies from Clippers hairdressers in Thetford put themselves through weeks of training in order to complete a team tri-athalon on behalf of Isabella.
They asked their customers, friends and families to sponsor them so that Isabella could get to enjoy some more happy times and we get to make some more memories with our precious daughter.
They raised a phenomenal amount of money, so much more than we could have ever imagined and we will be eternally grateful to them for all their hard work and efforts.
We chose to spend some of the money on a five day break at our local Centreparcs which is only a few miles from us. Perfect, as Isabella doesn’t travel too well and also our nursing team could access the site if necessary.
We took my special weenie auntie Bev with us which was a great help to James and I as she is very patient and helps in any way she can.
We were blessed with beautiful weather which meant we had loads of time outdoors in the fresh air exploring the vast expanse of forest and lakes.
We took Isabella swimming every day which is one of her most favourite activities and we got to go on the rapids, slides and whirly pools too!
Isabella’s daily routine means that she has to stop for tube feeds, medicines, treatments etc every couple of hours. This meant that we got to visit practically every restaurant and cafe that centreparcs has to offer and we were delighted by the warmth and friendliness of the staff we encountered, letting us get on with our procedures without rushing us or making us feel awkward.
The food was fantastic and it was a good job that we had to walk everywhere or we would be enormous now!
Isabella got to experience ten pin bowling, crazy golf and even went to her first disco! She had a great week and stayed very relaxed the whole time as did I after my afternoon at the spa with auntie Bev!
Janes didn’t miss out, he was happy to put his feet up and catch up on a little well deserved afternoon nap!
We can’t thank Lydia, Sally, Michelle and Sinead enough as they have really achieved what they set out to do. Isabella had a very happy week and we made some fantastic memories.

‘A Special Place’ by Isabella

I have just come back from my holiday to a very special place. It was to an island called Tresco which is one of the Scilly Islands which sit about 20 miles off of the coast of Land’s End, Cornwall.

My Great Aunties Bev, Max and Ade and my Great Uncle Smartie treated me, Mummy and Daddy to a week with them in a place which can only be described as ‘a little piece of paradise’.

The island is only a mile wide by a mile and a half long and there are no cars there. We arrived by helicopter which was very exciting (although I did have a small snooze mid flight!) and we were delivered to our cottage on the back of a tractor and trailer which was a fantastically bouncy ride!

The sea is as aquamarine and the sand is as soft and golden as the Mediterranean and luckily for us the weather matched, it was gloriously hot and sunny!

We stayed in a beautifully bright cottage right on the edge of the beach where we awoke every morning to the sound of Oyster-catchers playing on the sand. I could hear the waves gently lapping on the shore as small boats quietly sailed past.

We spent our days outside, on the beach, paddling in the sea, going for walks around the island breathing in the freshest of air I also got to go swimming nearly every day which I really loved. With the help of my swimming costume with built in floats and a rubber ring, I even swam by myself, I just kept kicking my legs and off I went, giving Auntie Ade a bit of competition!

Mummy and Daddy had a good rest too as everyone else did all the cooking and washing up which they were very thankful for.

We all had a wonderful time and Tresco will always be our very special place. xxx

Isabella ‘treats’ daddy to a show for Fathers Day

Isabella and James

Everyday is so important to us all as a family, but always try to fill our ‘family days’ with fun things that Isabella will enjoy.

Fathers day this year was no different and when we found out ‘In The Night Garden Live’ was being staged not too far from us we jumped at the chance at going.
Now Isabella has never been very interested in television but one program she has always enjoyed is In The Night Garden, not because of the colourful images, instead she loves the music each character sings and dances to. It not unusual for Isabella to stop everything she is doing to do her unique style of dancing when her favourite character – Upsy Daisy – comes on to the screen.
After having a lovely picnic next to showdome  (where the show is staged) in the grounds of Woburn Abbey we went in and were shown to our front row seats by some very helpful and understanding staff.  The stage was set up only a metre from where we sat with the Pinky Ponk being projected above our heads. The first character on stage was Makka Pakka who wanted to wash all his friends’ faces. We then met Iggle Piggle, The Pontipines, The Tombliboos and finally Upsy Daisy. Unfortunately due to Isabella’s poor eyesight she was not focusing on the 6ft tall Upsy Daisy standing only a few metres from us but was constantly looking towards the speaker which was transmitting Upsy Daisy’s voice.
Now Isabella might not have watched the show but her facial expressions told us she enjoyed the music.
We all had a great day and look forward to many more days not about Tay-Sachs.

The Importance of Portage

Isabella and Jenny

Earlier this year, before there was even a hint of a diagnosis, Isabella was referred to the Portage team.  I had never heard of it before, but now it is our most important appointment every week.  So what is it? . . .
Portage is a home visiting educational service for pre-school children with additional needs.  In short, we call it special play time.
Our Portage home visitor is Jenny and she comes once a week during term time and spends at least an hour playing with Isabella.  It is not just any old play though, it is completely specific to Isabella’s skills and focuses on her retaining these skills for as long as possible.  Repetitive play is the key.
When Jenny first came to visit I was completely at a loss when it came to play.  I tried everything that I could think of but Isabella was no longer interested in most of her toys and would not play by herself at all.  The only thing she wanted to do was take bricks out of a box and pass them to me.  I spent day after day trying to encourage her but nothing would work.
Jenny has many years of experience and knew exactly where to start and gave me lots of ideas to start working with.  Our first task was to put together a special play box with around six different activities in.  These include a box of six bricks, musical instruments, glove puppets and objects to represent songs.  Each item is played with in a specific way and encourages different types of play.  The repetition of play means that Isabella anticipates what happens next so for example when the glove puppets come out, she knows to hold their hands as we then sing ‘Ring-A-Ring-A-Roses’.  With the box of bricks, she takes them out one by one and passes them to me, like she was doing before, but then she takes the bricks back again and puts them back in the box.
It might sound like no big deal to most parents but to a parent of a child with Tay-Sachs, this is a big achievement.  Isabella will gradually loose these skills but for the moment as she holds onto them and occasionally gains new ones we can only rejoice.
Portage is always such a positive experience, we focus on what Isabella CAN DO rather than medical appointments that talk about what she can no longer do.  We look forward to Jenny coming to play each week, it keeps me going to face the challenges that we face for the rest of the week and for Isabella it is simply fun.
Thank you Jenny and thank you Portage.
For more information please see Portage’s website.

Family Day

Deborah and Isabella on the Snail

Last week we had what we call a ‘Family Day’ – a day not about Tay-Sachs.

We don’t get many days when the three of us are all together and very often the time we do get is taken up with appointments.  We look forward to our family days as the only thing to be booked in is to do something nice!

On this occasion we went to the seaside – Great Yarmouth to be precise.

Now Great Yarmouth is not everyone’s cup of tea – indeed under any other circumstance James wouldn’t go.  But Yarmouth is for children and I remember getting very excited as a child knowing that we were going on a day trip there.  There is everything a child could wish for including a fantastic place called ‘Joyland’ especially for small people!

We arrived at lunch time so we sat on the sea front, Isabella eating her perfectly healthy lunch and Mummy and Daddy enjoying a naughty treat of chips!

After lunch Isabella experienced her first ever donkey ride – she loved it – laughing and squealing all the way.  James however drew the short straw and had to trudge through the sand whilst holding Isabella on as I stood back and filmed the occasion – I’m not silly!!

Once James had tipped the sand out of his shoes, we headed for ‘Joyland’ and thank heavens, my favourite ride – THE SNAILS – was still there.  Everyone in my family has been on the snails at some point in their lives, brother, cousins, aunties and even Mum when she was little.  I had to take Isabella on . . . once . . . twice . . . three times!  She loved it, just as I had hoped she would.

Another happy memory made and a good day was had by all.

The next family day is scheduled for Father’s Day when we are going to see ‘In The Night Garden’ Live Show!  We will let you know how we get on!

Isabella’s lovely weekend!

Pensthorpe Nature Reserve

By Deborah Alford

“As time goes by we are finding it increasingly difficult to have days that are not about Tay-Sachs. However, we are pleased to report that we enjoyed a fantastic day out at Pensthorpe on Saturday where Isabella enjoyed hearing the ducks and birds and feeling the wind blowing in her hair! We also had a scrumptious picnic! Today was spent at a one year old’s birthday party where we were made to feel very welcome. Isabella loved the bouncy castle! We arrived home to find a box of chocs on our doorstep from some very good friends! We have lots of appointments again this week so back to normal but feels like we have had a little time out.”