Let me begin by saying my wife, Lucy & I are the proud parents to 3 beautiful daughters. Meaghan aged 7 & our identical twins Esme & Evie, who were born on the 31st December 2016.

Esme & Evie were born via emergency C-section, at the QEQMH, Margate. Evie was delivered second and was in a poor condition and immediately required urgent medical attention. Over the following 36 hours Evie’s health continued to deteriorate and to provide her with the care she required she was transferred to the Oliver Fisher Neonatal Intensive care unit (NICU) at The Medway Maritime Hospital.

The nursing staff and consultants, within the Oliver Fisher Unit provided Evie with the care and attention she required and she was given the provisional diagnosis of Hypoxic Ischemic Encephelopathy (HIE). However, an MRI completed, while under their care, identified news that nobody was expecting. Evie had suffered a rare, extensive stroke, around the time of birth that affected both sides of her brain.

Over the preceding months Evie’s diagnosis became clearer and she was eventually diagnosed with evolving four-limb cerebral palsy. Further to this we had our suspicions about Evie’s vision, which were confirmed upon investigation under the care of Great Ormond Street, London. It was confirmed that her optic nerve was not functioning but may be able to determine the difference between light and dark. We were advised that no medical intervention would offer any benefit. Evie has since been registered blind.

Evie had been an unsettled baby since birth, requiring constant attention, handling and gentle rocking to settle her and soothe her to sleep. As the months passed there was a progressive deterioration in her symptoms/behaviour, where she was waking regularly through the night in obvious pain. This materialised as seizures, which resulted in admission to the Evelina Children’s Hospital, London, in an effort to manage what we now knew to be epilepsy. Luckily she was discharged home on the morning of her first birthday.

Subsequently, a further MRI had identified a further bleed on her brain and almost complete loss of brain tissue within the right side of her brain. She continues to be under the care of the Evelina Children’s Hospital London to monitor her progress.

Locally we are under the excellent care of physiotherapists, occupational therapists, support workers and Evie’s key worker. Although Lucy and I are physiotherapists, people may assume that we would be experts, with the knowledge and skills required to support Evie. However, we are both adult physios and do not have the expertise of our paediatric colleagues. The specialist physiotherapists and occupational therapists continue to teach and educate us on the appropriate techniques and management to offer Evie the best possible outcome with her function. Evie will never be able to sit independently, crawl or walk and will require full care and assistance throughout her life.

I cannot express my gratitude to Lucy, who provides Evie with daily physio and stretches and progression of her time in her standing frame, every single day, while singing songs to both her and Esme, to keep them entertained.

Unfortunately due to Evie’s care needs and constant attendance of medical and therapy appointments Lucy has been unable to return to work. In order to provide Evie with the necessary experiences, adaptations to our home, equipment and additional therapy we have set up this page to ask for support as we cannot do this alone.

Evie has brought so much joy into our family and like any parent we just want to offer her every support and opportunity possible in her life. We hope you can help us with this.

At present Evie is a happy little girl with a huge personality and has a laugh that always makes us smile. She has her two beautiful sisters, Meaghan & Esme, that love her so much and involve her in everything they do, and for that we are extremely grateful.

In setting up this page, I am planning on raising money for Evie to provide her with specialist physiotherapy, appropriate sensory equipment, aquatic therapy and opportunities to enjoy and improve her quality of life. On September 1st 2019, I will run the 45 mile route that Evie took to save her life. I will be accompanied & supported by my great friends Noel Rice, Simon Howe & Dan Clarke, cycling along side me & Dorota Maciolek, who will be driving the support car.

Evie was born at the QEQMH, Margate & transferred to The Oliver Fisher Neonatal Intensive care Unit, Medway Maritime Hospital, Gillingham when she was only 36 hours old.

However, due to 17miles of the run taking place on a narrow footpath along the A2 from Gillingham, we will begin our journey at The Oliver Fisher Unit, The Medway Maritime Hospital & run to the QEQMH, Margate.

This will ensure the safety of the support team & runners by running the stretch of the A2 at the quietest time of the day, with the majority of the run left along coastal paths.

This will also help with having the support of family & friends cheering us on, when we need it most through the remaining hours/miles of the run!!!

So please make lots of noise if you see us & share all your photos on Facebook so we can capture the day!!

We plan to begin at 6.30am from The Medway Maritime Hospital, running along the A2, through Sittingbourne & Teynham, turning left onto Ospringe road (at The Ship Inn) into Faversham. We will run through the Standard Quay, before running along the creek & onto the back roads through Graveney to Seasalter. Here we will join the costal path along the seafront through Whitstable, Tankerton, Hampton, Herne Bay, Beltinge (Home), Reculver, Minnis Bay & Westgate before running along Margate sea front & finishing at The QEQMH Maternity unit on St. Peters road.

EVENTS

As part of my training I will also be running the following events –

Jan 27th – The Canterbury 10 mile. Completed with a time that I’m proud of - 1hr 23mins & 30secs.

Feb 10th – The Deal Half Marathon (13 miles). Completed with a time of 1hr 46mins & 41secs.

March 17th – The Thanet 20 Mile Road Race. Completed with a time of 02:52:45. Tough end to the race with wind & snow, but thankfully got it done. Proud to finally wear my running top, which gave me motivation when the legs begin to hurt.

April Sunday 14th – The Brighton Marathon. Completed with a time of 04:04:30. Very pleased as i was aiming for 4hours. Emotional afterwards as thinking of Evie as my motivation, when the legs began to hurt. She runs her own marathon on a daily basis so the pain I endured today was for her.x

June 15th - The Kent 50 mile Endurance Run & Challenge,

Completed 50km (31 miles) in a time of 6 hours 15mins. Im learning to slow the pace to be able to complete Evies Journey/45 mile run on the 1st September & learned a lot today thanks to my experienced ultra running partner Mark Foster. THANK YOU Mark!

I would once again like to say THANK YOU to everyone for following Evies Journey. We really value your support & for all your likes & comments on the videos we post.

Evie is doing well at the moment but as she grows we appreciate that her needs begin to change & with your support we feel we can rise to the challenges that lie ahead & provide her with the love, care & support she needs to maintain her quality of life. If we could hug each & everyone of you for your generosity we would. THANK YOU again everyone for supporting Evie.x

The training now continues for Evies 45 mile run on the 1st of September!!

August 31st - Sponsored Marathon Walk

Rebecca Tooher is organising a sponsored walk to help towards Evie’s fund raising. She has written the following words:

As you are aware Gary will be running 45 miles on 1st September and I propose that those who are interested join me in completing a marathon walk from Whitstable to Broadstairs on Saturday 31st August. There is no requirement to do the full distance - just do what you can. It is a lovely coastal walk and will be a wonderful experience to be part of team helping such a lovely colleague.

If you are interested in taking part as either a walker or being part of a small back up team please let me know and I will pass on full details.

Here is some info about the 31st August....

7.30am start at The Hotel Continental.

8.30am at The Hampton inn, toilets near the rowing club.

9.30am Reculver Towers and toilets

10.30am Minnis bay, cafe and toilets

12.00West Bay

12.30pm Arrive in Margate and collect our well deserved chips! Toilets in the Turner Centre.

3pm The Royal Albion Broadstairs where hopefully Gary will be there to greet us.

I look forward in hearing from you.

Rebecca Tooher

Congratulations to everyone who took part in the Marathon Walk for Evie. What an amazing achievement by every single one of you. We can‘t say THANK YOU enough for all the effort you have each put into training & fundraising. We are extremely grateful.

Special THANK YOU to Rebecca Tooher, who arranged the Marathon Walk for Evie. We are extremely touched by the efforts you‘ve gone to in making the day so special. THANK YOU Rebecca.x

September Sunday 1st - 45 mile run from The Oliver Fisher Neonatal Unit, The Medway Maritime Hospital to the QEQMH, Margate.

WE DID IT!!!!! The run went to plan & was such an amazing but emotional day.

A special THANK YOU to Dorota Maciolek (support car), Simon Howe, Dan Clarke & Noel Rice for their support throughout the run.

To EVERYONE who came out to cheer us on throughout the day. Your support gave us renewed energy at each cheering station. Lucy & I ate extremely humbled by the love & support we have with the great friends & family we have in our lives.

To EVERYONE that has taken the time to send messages of support for Evie & who has donated, there are no words to express how THANKFUL we are to helping us improve Evie’s quality of life. THANK YOU!x

If you would like to see the progression of my training you can follow me (Gary Toner, Whitstable) on the Strava app.

THANK YOU in advance for your support of Evie and for us as a family.

We have received some cash donations for which we would like to take the time to say THANK YOU to:

Julie Graves & Phil Knowles

Rosemary Simmonds

Liam & Marie Barry

Rachael & Ritchie Magee

Peter & Kathy Howe

Derek Holland & Maureen Solley

Christine Dyer & Family

Joan Theze

Alison & Eleni from the St. Lawrence Sports & Physiotherapy Clinic, Canterbury, and to the following lovely people who donated under their care - Barbara W, Joanne, Nicholas, Margaret, Barbara C, Monica, Ruth, Jackie, Michele, Lemon

The Turner & Parsons Families

All the staff at the Whitstable Medical Practice, who organised a raffle for Evie

Marie Conway

Chris Sykes

David & Sandra Barrow.

Colin & Dorothy Duce

Maria Foreman

Thomas Mc Fayden.

Lisa Leggate

The St. Mary’s Gillingham Lodge

Diane McKay

Shane O’Hare

Peter O’Hare

Thr Gribben Family

Paul O’Hare

CHARITIES

If you prefer to donate money to charity, please consider the following –

*Oliver Fisher Special Care Baby Trust http://www.oliverfisher.org

*The Special Care Baby Unit, the Queen Elizabeth the Queen Mother Hospital, Margate.

*SNAPP (Special Needs Advisory & Activities Project), which is based in our local town of Herne Bay - http://www.snaap.org.uk

SNAAP is unique: there are no other local organisations which provide the extensive range of services to children with every kind of disability, aged from 0-25 years, in partnership with parents. The focus of the services is upon all of the child's needs including educational, social, developmental and emotional. We focus upon the whole family and not just on the child with disabilities.

*Demelza House - https://www.demelza.org.uk

Demelza provides specialist care and emotional support for children with terminal conditions and their loved ones, so they can enjoy time together as family, for as long as they have.

“Helping those who may not live a long life, to live a full life.”