here goes , our best friends Louise and Mark went on to have a family together starting with the birth of their son , our godson Mason back in March 2019 he is a wonderful little boy and is as cute as a button. The family was then made bigger with the arrival of their daughter Robyn back in October 2021. Robyn had a complexed birth with many life threatening medical issues leading to her needing immediate intervention from the NICU team based at the RVI. One being a tear to her stomach from a feeding tube and a blood clot in her leg.
There were times whens Robyns recovery was touch and go however like her cousin Jess she battled through and proved us all wrong . Robyn was in the NICU for 8 weeks when she was born with daily visits there after and many more ever since but mum louise knew there was something else wrong, something not quite right. She noticed some intermitant bruising in various places and these were non fault injuries and medical interventions were needed. Upon multiple health checks the family were referred to the centre of life where scientists discovered Robyn has a rare genetic condition called ' Ehlers Danlos Syndrome ' ! Robyn has a variant of this that is not know and will be monitored closely by the specialists at Sheffield hospital and the centre of life for the rest of her life.
What on earth is this i hear you all ask well let me try and explain in the best way possible. Robyn has severe elasticity of her skin resulting in her skin bursting open or bruising at the slightest touch. Physically she is struggling to hit milestones due to her fragility. She can not go to nursery, go to parks or play areas., even playing with other children or toys alone can be a danger to her. She has to have 24 hour care by her parents. Robyn is affected by this serious condition in many ways, severe and life threatening fragility inside and out, her teeth are affected so serious consideration is needed in what she can eat and drink. She has extreme pain in all of her joints alongside hypermobility which has resulted in her struggling with walking ( she can not wear shoes as her little feet can not tolerate them) even to touch her skin causes her pain but she is still the happiest little diva that never stops smiling. There are various elements to Elhers danlos syndrome and it seems Robyn has elements of several variants. After multiple visits to Sheffield hospital with Genetic Specialists and the genetics team at the centre of life, Robyn's condition still remains a mystery and a learning curve to all that come into contact with her. A lot of research is being done on Robyn and answers to most questions at the moment are we don’t know!!!! Robyn and her parents have been on a long tough journey but are also working closely with Robyns specialist care team at the RVI and a lot of support is received from Robyns two community nurses. Many journeys are made to Sheffield hospital and the centre of life and appointments with other specialists and consultants involved in helping Robyn. This is very straining for the family as both parents have had to stop working to provide around the clock care. On top of all of this and whilst getting Robyns prognosis our beautiful godson was diagnosed with severe autism in 2022.
The family are under a great amount of stress and worry as I'm sure you can all imagine especially as medical professionals , professors , scientists etc are not in a position to say what is in store for Robyns future or if this will have an effect on Robyn's life expectancy.
So this is where you all ask where Jessica comes into this and so i will tell you , Robyn and Jessica have a great rapport and Robyn is often know to push Jessica's photograph around the house in her dolls pram. So one evening Jessica was telling me that her Pysiotherapist asked if she'd be interested in doing the " Jnr Great North Run " and she was thinking about this all day . Later that evening Jessica announced that this is something that she would like to do but in honour of her cousin ' Princess Robyn '.
The reason for this is that the family are going to need multiple house adaptations for Robyns welfare and safety. They own their own home but more space is needed to suit Robyns needs and lifestyle. Robyn is going to need a specialised bed, these cost around £5,000 from America, and so much more besides this.
So hear we go folks we are looking for the power of facebook and the community of South Tyneside to come together and unite for two very inspirational little girls to whom despite everything they have going on wake up every morning with the biggest brightest smiles and don't and wont let there disabilities effect them. Please dig deep folks every little helps.