Hi, my name is Abbie and I’m fundraising for my 4 year old daughter, Blake.

Blake has always been on the go…Walking at 9 months, riding a scooter at 1, climbing higher than the big kids up trees…a very active, happy and adventurous girl!

In June last year, we noticed Blake’s speech wasn’t as normal, and her balance was off. This raised alarm bells in my head as she has always been so physically able. We took her to the hospital and her condition worsened throughout the day, leaving Blake unable to walk by 7pm.

A CT scan revealed a bleed in her brain, caused by an unusual mass next to her thalamus that had bled. The pressure from the bleed caused a stroke. Because of the location of the bleed, surgeons thought it best to leave the mass and work on adjusting Blake to life and recovery…

Less than a month later, Blake complained of a headache and it was found that this mass had bled AGAIN. The bleed was now the size of a satsuma in her precious little head. The pressure it was causing was dangerous and the decision was made to operate. It was found that the mass was a hemangioma…commonly known as a strawberry mark, in her brain. The surgery went amazingly well and we thought the hemangioma was removed in its entirety. Onwards and upwards!!?

Blakes recovery was incredible and although she was left with right sided hemiplegia, within a year she made so much progress. Learning to write with her left hand (although naturally right handed), learning to walk again, run, climb, and enjoy the things she loved before.

Last month, Blake complained of a headache again. Her pupils were uneven and she was wobbly. Blake was rushed by ambulance to Addenbrooke’s hospital, where it was confirmed she’d had another bleed. A tiny part of the hemangioma had managed to hide during her last surgery, and had bled again.

Because of the history of rebleeds, surgeons made the decision to operate. Her surgery was on 7/11 and we are currently awaiting lab results to see if they managed to remove the remainder of the hemangioma. We have also put Blake on a medication that has been known to shrink external hemangioma in babies, although the effectiveness on internal and older hemangioma is unknown. What Blake has is extremely rare and so everything is trial and error unfortunately. We hope this medication will get rid of any remaining hemangioma, and prevent regrowth (as it’s a possibility this new bleed was caused by a small regrowth!). No one really understands how hemangioma work or why they occur (genetic testing was done on Blake and it was found that it wasn’t a genetic trait!).

This bleed has caused Blake’s weakness to come back (thankfully not as bad as the first bleed). She will have to learn to walk and use her hand all over again. It’s a good job she is as determined and resourceful as she is.

We are worried for what the future holds, but also so grateful to the incredible surgeons and hospital staff for everything that they have done and are doing for our amazing little girl. & hoping that this surgery, and the medication she goes on, will allow Blake to recover for good this time and go on to live the full, adventurous and exciting life that I know she’s destined to live.

After Blake’s first surgery, we had some physio through the NHS. It was extremely helpful but it slowed to once every few months.

We want to give our girl every chance at a full recovery. We looked into private physio before but it is understandably quite costly (£100+ a session) so it wasn’t something we could book for Blake unfortunately. This fundraiser is purely to help us with Blake’s recovery and will only be spent on Blake’s recovery costs. It will help fund physio, OT, and specialist equipment.

Thank you so much for your time reading this, and we are extremely grateful for any help for our girl!! Take care x

So overwhelmed with the response we are getting to this! Thank you so much to everyone who has donated or shared our story. It’s been a very emotional journey and just can’t thank everyone enough. It means the world and is so comforting to know there’s so many of you in Blake’s corner♥️ 

25/11 - we spoke with the hospital today and…they confirmed that the blood clot that was removed contained hemangioma!!!! 

Blake’s angiogram just before her surgery didn’t show any signs of a hemangioma so the assumption is that it had bled, and as the blood clot formed, the hemangioma became detached naturally and it was absorbed into the blood clot. 

Blake has also started the medication known to shrink hemangioma in babies, and we have noticed a slight change in her external hemangioma. So we are hoping that even if there is a tiny bit left in her skull, the medication will erase it. The lab results from the blood clot are positive though so we are hoping that this medication is simply a precautionary measure.

We are on cloud 9! Amazing results from Blake’s surgery, she is doing INCREDIBLE. Blake is shocking everyone with the rate of her recovery. We have booked in for an Occupational Therapy assessment this Thursday and will be using this gofundme money towards weekly sessions. The rate Blake is recovering I believe these sessions will be the push she needs to make the full recovery we all know she is meant to achieve

 

Thank you so so much to everyone who has donated and shared our story, and to everyone that has been a support for us along the way. We are so so lucky♥️ 

18/12

Blake has been doing amazing with her therapy. She has been recommended to do an intense course of CIMT therapy (Constraint Induced Movement Therapy), which involves putting her “good arm” in a cast. It effectively forces her to use her affected arm and from speaking to other families, the results are amazing. The cost of this therapy comes to roughly £3000, which, along with the therapy Blake has had so far, eats up the entire £4k we have raised so far. We are super keen to get Blake started on this as she is showing promising potential, and are so grateful to you all for making this happen♥️ hopefully it will give Blake the push that she needs. Thank you again everyone xxx