Ruby's journey of hope
Donation protected
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
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
Organizer
Bernie Higgins
Organizer
