Ruby's journey of hope

£11,850 of £15,000 goal

Raised by 171 people in 44 months
Hi, I'm Bernie, Ruby's mum. I would like to tell you about my beautiful daughter and why we are trying to raise some funds for private therapies and equipment.

Ruby is my first child and an absolutely delightful little girl. When she was born, she was very poorly and spent the first month in the special care baby unit. For the first few days on the unit we helplessly watched her deteriorate whilst the doctors came up with a plan for Ruby. A few days later she was diagnosed with meningitis and encephalitis.
 
The doctors and nurses where amazing and without a doubt, they saved her life. After a few days she started responding to the treatment and we felt reassured that she was a fighter and was going to survive. At this point we were advised that she would be most likely to have learning difficulties, but we weren't going to lose her. This was all we needed to hear, and we could look forward to eventually taking her home.

After a month in hospital, we took Ruby home and spent every minute of every day watching her every move and trying to encourage her to reach her milestones. Ruby was very difficult to feed, had very poor head control, at 10 months old she could not sit or roll over, but we knew she had a tough start and so we attributed her delay to this and hoped she would eventually 'catch up'

At the age of 1, Ruby was diagnosed with cerebral palsy. 
  
Cerebral palsy is a condition that affects muscle control and movement. It is usually caused by an injury to the brain before, during or after birth. Children with cerebral palsy have difficulties in controlling muscles and movements as they grow and develop.

Ruby's paediatrician made referrals to physiotherapy, occupational therapy, speech therapy and the local children's disability services who we have been working with for the past 5 years.

Ruby is now 6 years old and has made some encouraging, but slow progress in her early years. However, she still has a long way to go with her development and remains unable to walk or talk. She has so much determination but her condition makes this difficult. The type of cerebral palsy she has (athetoid) makes it difficult to maintain a posture and to do everyday tasks like to hold onto an object, like a cup or a spoon, due to fluctuations in muscle tone. She struggles with balance and coordination. It is also difficult to control muscles of the face, the lips and tongue, making feeding, swallowing, chewing and speech very difficult. 

In April 2015 we attended a seminar hosted by the Family Hope Center for an insight into the child's brain and we were really encouraged to hear that in fact you can heal the brain. This is done by creating a neurological rehabilitation program individual for each child and teaching the parents a variety of techniques to heal the child's brain. No operations, no chemicals, no surgery, just techniques to organise the brain.

It is with thanks to everyone who has supported our Journey and campaign so far, In September 2015 Ruby's Dad and I were able to attend the 3 Day Parent training workshop, this was followed by 3 days of assessments and a full evaluation for Ruby. Ruby's chronological age at that point was 44 months, her neurological age was calculated to be just 14 months. Ruby has a therapy program specifically to aid her development which she works on at home 5 afternoons per week. We have seen some positive changes since starting her journey. Her appetite is better, she is drinking more fluids, chewing and swallowing has improved, she is being more vocal, and her balance when sitting is improving.




Ruby now attends a special local school 5 mornings per week which she really enjoys. School are supportive of the therapies we do at home and understand the importance for us to part time school to allow her time to work on her therapies at home. Ruby also enjoys regular holistic massage, hydrotherapy and we've also invested in a Mild Hyperbaric Oxygen chamber at home for her.




Neuroplasticity is the brains ability to reorganise itself a form new neural pathways to accomplish a needed function. This is done through lots of stimulated activities tailored to suit the brain injury. We know that it is possible for children with brain injuries and neurological challenges to excel themselves and even catch up to their peers.
We believe it works for Ruby too, and will help her to have a more independent future, but unfortunately private therapies and equipment come at a price. Which is why we are asking for help from friends, family and anyone kind enough to help make this journey possible. Your support would mean the world to our family and our beautiful daughter.

Thank you for reading our story x





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Update 18
Posted by Bernie Higgins
19 months ago
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On Sunday 28th May 2017 a good friend of ours Phil Kimpton completed the Manchester half marathon in support of Ruby's journey. A big thank you and well done to Phil, and thanks to everyone who sponsored and supported this fantastic challenge!
Lots of love xxx
Well done PK x
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Update 17
Posted by Bernie Higgins
21 months ago
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Hi everyone! On Sunday 30th April, myself, Graham and a few of our friends will be heading over to Snowdonia and climbing to the summit of Snowdon.
We will be doing this challenge with a great team of people from our local running club 'Madrunners' - all taking part to raise awareness and fundraise for some great causes that are close to our hearts.
If anyone would like to sponsor us for Ruby's journey, we would really appreciate your support xx

Lots of love, Bernie, Graham, Ruby & Harry xxxx
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Update 16
Posted by Bernie Higgins
23 months ago
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Hi everyone! Just wanted to share an update of Ruby's journey and an upcoming event......
Most of you know that Ruby has just celebrated her 5th birthday and has started in reception class at a very special local school, which she absolutely loves. Ruby has been doing 2 mornings per week, spending the rest of her time at home working on her Neuro rehab programme, and is making fantastic progress! We have just reviewed her education, health and care plan at school, they too can see the benefits from what we are doing with Ruby at home and have agreed to work with us on her programme and introduce some of the techniques we do at home into her school sessions. This is great news for us, as we know how much she enjoys school and we are now happy for her to attend a few more mornings whilst continuing on her journey and getting her education and therapies both at school and home.
It is the support from friends, family and everyone around us that makes this journey possible....... Xxxxx

Phill Kimpton is a friend of ours and is going to be running the Manchester Half Marathon for Ruby on 28th May 2017 - A big thank you to Phill for giving up his time and offering to do this for Ruby, any sponsors would be very much appreciated xxx

Love Bernie, Graham, Ruby & Harry xxxx
Good luck to Phill Kimpton x
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Update 15
Posted by Bernie Higgins
28 months ago
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Hi Everyone! We just wanted to give you an update on Ruby's journey.......
We have just had an absolutely fantastic 2 days, we've been back to see the FHC Team with Ruby and are absolutely thrilled with her progress. All her hard work has been paying off and she is a superstar!!! Ruby has made remarkable progress and has moved onto new levels in all areas of development. We now have a new and exciting programme and the toolkit to guide and challenge her through her next levels of development. We will continue to work on her program at home, with the support from the amazing Team at the Family Hope Center who we hope to see again next year.
We cannot tell you how excited we are for her future, and how grateful we are to everyone of you who help us and support us on our journey..... We couldn't have got here without you!
Love to you all xxxx Bernie, Graham, Ruby, Harry xxxx
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£11,850 of £15,000 goal

Raised by 171 people in 44 months
Created May 27, 2015
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