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A little girl in a princess dress at home.
Amber usually visits Little Harbour with mum, Samantha, dad, Liam, and sister, Jaden.
Amber celebrated her sixth birthday in lockdown with a virtual princess party!

While the family are missing their visits to Little Harbour, mum, Samantha, explains how they are pulling together to help with the daily routine and what they are doing to make the most of their time at home.

“Our little girl is Amber and has been going to Little Harbour for a few years now. We're happy to share our story.

Our family – me, Samantha, my husband, Liam, my 17-year-old daughter, Jaden, and our six-year-old daughter, Amber - have been in lockdown since a week before the rest of the country went into it. We felt it was the right time as Amber has many complex health needs including an extremely rare syndrome that affects her lungs, so we became pretty worried and decided to go into lockdown. The rest of the country quickly followed.

Amber has a home care package of eight hours a week, which we stopped straight away to keep her as safe as possible. So, me and my husband are doing 100% of Amber’s care now.

Normally in everyday life, it's mostly me doing the carer role as Liam works long shifts in the military at RAF St Mawgan. However, as soon as we went into lockdown because of Amber’s condition, RAF St Mawgan decided Liam should be at home to limit the chances of him contracting COVID-19 and passing it on to Amber, which could be fatal. This has been fantastic because he's been able to be at home and help me with the very hard routine that we have to follow every day with Amber, which now includes schoolwork! 

This routine is very sensory based as Amber can't talk or walk with severe development delays, but still a lot to do and take in as we try to do what the teachers do with her. We are having lots of fun with it though! Doubletrees school have been fantastic, checking in and sending voice messages to Amber so she can hear their voices as she is blind. We’ve also been having lots of fun with the whole school on their parent Facebook page.  

Luckily, we have a big garden and the sun has been out so that's kept our spirits up. Amber will be isolated for 12 weeks at the very least, so the whole household obviously has to do the same which will be tough on our daughter, Jaden, as a 17-year-old, who has to do this too to protect her sister. But she doesn't moan about it, she just gets on with it, so her life has changed too.

Amber also had her birthday in lockdown. We were due to have a birthday party but instead we had an online birthday party with Elsa from Frozen from a princess party company we found online! It was done on Zoom with a few of Amber’s other friends and was brilliant!

Little Harbour has been fantastic and brought food boxes donated by Morrisons to our home. We actually had our shopping cancelled, so this couldn't have happened at a better time!  

So far, we are healthy and keeping busy and sane! We can't wait for the day to just take Amber for a walk in her wheelchair and for Jaden to say she's off out with her friends, this seems really far off. But we're all doing the same thing so we’ve just got to get on with it, keeping Amber safe is our priority and we feel proud as a family that we are doing everything we can to do just that."