Sydney’s Retreat

05/01/2023

Can’t believe this little beauty is going to be 3 years old in March. Our little miracle 💗

28/08/2022

Beautiful day out with a beautiful girl and beautiful pram

14/05/2022

As most people will be aware our little girl Sydney has a very rare genetic condition called primrose syndrome, she’s the only person in Scotland recorded. This condition was only found in the 80’s and therefore there isn’t too much information about what to expect as she grows up. Over the past couple of months she had a massive behavioural change and started pulling her hair out, it started with a few strands, then chunks and now she’s started eating it. She’s pulling out that much hair that she’s now got an infection in her button feed with the hair getting tangled round it.

We have came to a heartbreaking decision for Sydney’s well-being to shave it off and start again and hopefully she’ll forget about the pulling if there’s nothing there for a while.

Whilst we are helping our little girl we thought it would be a good idea to help another little girl in the process and so we decided we are going to do a fundraiser.

This is for the beautiful flora. Her family need to raise a total £312,000 by august (the funds that have come in so far from others fundraising is amazing) but they still have a bit to go.

Our fundraiser will just be a short one and end on 3rd June as we need to get this hair off sooner rather than later. I’ve just set up our fundraising page through Solving Kids' Cancer, let’s see what we can all do far and wide.

If you can, then please make a donation, every penny helps.

Let’s make a difference together. The comfort this will give us knowing that our little girl’s journey helped another little girl on her journey 💗

Flora’s Fight Against Neuroblastoma

We would love to help your beautiful girl by helping our baby girl at the same time.

05/02/2022

Just a little update on Sydney, she is now 23 months old, she has learned to roll over now but still needs supportive equipment for sitting. She has just been fitted with 2 hearing aids so hopefully we should start to see a different with her interacting with us.

Sydney’s retreat is ready to start welcoming guests back so if your looking for a getaway then please send your enquiries for date availability.

Please remember that whilst you stay with us you are also contributing to Sydney’s future development as we use any funds from the caravan to buy her any supportive equipment she needs 🥰

12/10/2021

A brief description of primrose syndrome and some lovely editing work by Sydney’s 11yr old sister 💕

12/10/2021

💕

11/09/2021

We weren’t meant to be a special needs mummy and daddy , we weren’t given a special child because we are some sort of ultra special, amazing, strong couple.

We were given a special needs child because genetics didn’t play out right when our child was growing in the womb. We are your average people, who were given a child who required more. More love, more care, and more attention. We were not strong, but made stronger because of our child and her needs. We are not amazing, We are human. We adapted to our life with her needs. That’s what humans do, we adapt and change to our situations and surroundings.

“I don’t know how you do it”, we have to, We just get up each morning and do it, because our child depends on us. Any of the parents who have said this to us would do the exact same thing if they were put in our shoes.

Us special needs parents, we’re not superhuman. We’re just parents taking care of our kids, loving them just as you love yours. So I guess that makes all parents pretty amazing, right? If you love and care and give your children a happy, healthy life regardless of what their medical file says or doesn’t say, then you are equally as amazing! ♥️

We’re all just parents trying to make it to bedtime each day.

Sydney’s Primrose Syndrome Journey

05/09/2021

So this little pumpkin has been busy busy with appointments so much so I’ve forgot to update for a while. Sydney had an appointment last week at the sleep posture clinic as they fear she has a curvature in her spine, they were looking at putting her in a brace something like in the picture where she would be strapped in at the hips and chest so she would be completely flat whilst sleeping, thankfully she doesn’t need this just now but will be closely monitored if any changes.

Tomorrow we have an audiology appointment to check if there are any changes in her hearing and Tuesday she’s off to Astley Ainslie wheelchair and seating services to be measured and fitted for her support pushchair.

She’s just a little superstar 🌟

05/09/2021

Some lovely reviews for Sydney’s retreat from guests who have stayed with us x

13/08/2021