Getting Arwen Some Independence!

Hello and my name is Tish and I am the proud mother of Arwen.

Grab a cuppa and a snack as we talk a bit about Arwen and why we have chosen to do a fundraiser.

This fundraiser is for us to be able to go ahead and get Arwen a Leckey Firefly Scooot (pictured) which will enable her to have a sense of independence and freedom.

Arwen hasn’t had it easy. From 4 months old we noticed something wasn’t right. We took her into A&E for Bronchiolitis and she was head shuddering and showed nystagmus (eyes shuddering and unable to focus). We were admitted and underwent many tests over the span of 4 days.

Over time, she fell behind in her milestones. She couldn’t lift her head until she was almost 2 and only in recent months, she has been able to sit up unaided (however she is still incredibly unsteady), she has started dragging herself across the floor as she cannot crawl (she also rolls to get to where she wants to go!)

Arwen is also non-verbal but you can tell she is trying so hard to be able to say words and communicate.

There is a very small chance that she will be able to walk.

We have had wonderful charities help fund her equipment which is rather expensive. She currently has two Leckey BeMe specialist support chairs (one for home and one for nursery), an ETAC R82 Stingray specialist support buggy, a Leckey Squiggle standing frame and an ETAC Flamingo Bath Seat.

Whilst all of these pieces of equipment are amazing and beneficial, the Leckey Firefly Scooot will offer Arwen independence as it acts as a wheelchair but is also a crawling and mobile aid.

Now, we are waiting for charitable funding for a specialist car seat for Arwen which is also not cheap. So this is why, for the Firefly, we have chosen this route to allow charitable funding to go towards another child in need.

Her care panel have been nothing but fantastic and we do attend a lot of appointments.

She is seen by:

and we also attend a 6 monthly personal care plan meeting which is the majority of Arwens care panel, along with nursery and a member of the council.

Between Neurology and Genetics, Arwens condition has been narrowed down to a Genetic Neurological Disorder and we are currently waiting for results via Trio Whole Genome Sequencing. However, this still may leave us with no answer.

Nevertheless, Arwen is THE most happy little girl and everyone who meets her… adores her! She may be complex but this piece of equipment will hopefully allow her to feel a bit more ‘normal’ and enable her to be more involved on her terms.

*** EDIT*** the target has been increased which will be going towards Arwens Car Seat which I believe is still pending funding (and is over £3000 so every little helps towards that) and also a donation to Nevill Hall Children’s Centre where Arwen has her Physio, OT and Speech and Language therapies with her amazing care providers! After all, they deserve it!