About

I’m a 30 something Mama to the very handsome Mr Bear and the cheeky Mr Bug. Both boys have piercing blue eyes that hypnotise anyone they meet and have a penchant for nurses!

Bug is a cheeky little boy who arrived in October 2014 – he is a blue eyed bouncing bonny cheerful chappy who lights up any room with his huge gummy grin and excited squeals. He is patient, tolerant and is so aware of the world around him!

Bear is a very handsome little boy, with porcelain skin and eyes like sapphires that draw anyone and everyone towards him. He has a cute lopsided smile and wavy light brown hair that has a mind of its own. He loves painting, baking with Mummy, watching movies in bed with his baby brother Bug, lights, messy play, cuddles with his dog Pip and swimming with his Daddy. He brings joy to everyone around him and can melt even the toughest men! He gives awesome cuddles and butterfly kisses (with his eyelashes).

He also has complex medical needs and is profoundly disabled.

Bear was born in July 2010, three weeks before his due date and following a healthy and otherwise ‘normal’ pregnancy. He was delivered in hospital after a very short labour and blue light dash by ambulance, only making it to the hospital with minutes to spare and no time for any really effective monitoring to take place. It was clear that he was in distress at that point as he had passed meconium whilst still inside and it was clear that he needed to be out, quickly, which he was, arm up in the air like a teeny Superman, all 4lb 15oz of him.

He needed help to breathe at the beginning but soon got the hang of it (something to this day his consultants are all really pleased with) as he has passed the meconium he was to start a 48hr course of antibiotics as precaution and the Paediatricians visited him to check him over. It was at this point they noted his rapid breathing, how cold he was and the fact that his limbs were jittery and it was decided that he be admitted to the Somerset Neonatal Intensive Care Unit for observation. It was there that he spent the next 21 days, where he had severe neonatal seizures and struggled to feed. An MRI scan at 7 days old revealed that he had suffered a Subarachnoid Haemorrhage and severe Hypoxic Ischemic Encephalopathy (HIE III).

As a result of this brain injury he has a number of conditions that require 24/7 specialist care. He has severe Spastic Quadriplegia Cerebral Palsy GMFCS 5 , Global Developmental Delay, Microcephaly, Epilepsy, Gastro-Oesophageal Reflux Disease, Cortical Visual Impairment (CVI – registered blind), Clonus affecting all limbs, Scoliosis and Kyphoscoliosis. He is fed via a Gastrostomy (AMT Mini-button) directly into his stomach as his swallow became unsafe and placed him at serious risk of aspiration which could lead to Pneumonia. He takes a number of anti-epileptic and anti-spasmodic medications to help to relieve his symptoms. He has significant sleep issues and needs attending to for most of the night. He had a tracheostomy placed in December 2014 after developing an acute onset stridor and upper airway obstruction which caused a number of hospital stats due to aspiration pneumonia and cheat infections.

He cannot move himself. He cannot, roll, reposition himself if uncomfortable or scratch an itch. He has very limited independent movement and relies on 24hr postural care through the use of specialist equipment and specific handling techniques. He is unable to sit independently for more than a few seconds until a spasm or seizure knocks him off balance. He is starting to use his arms to indicate choices and try to move objects He is also non – verbal but has recently begun to smile and make some noises which are indicative that he is making some(albeit slow) progress. 

He needs an extensive amount of specialist equipment in order to function in day to day life, he currently has a profiling bed, specialist sleep system, hi-lo functional seating, outdoor wheelchair, posturally supportive armchair, a Jenga-like pile of different shaped physiotherapy rolls/blocks and wedges, a physiotherapy bench, balls, vibration/acoustic mat, bathing chair, standing frame and orthopaedic boots and the most recent addition was a hot tub so that he can receive daily hydrotherapy which has done wonders for his spasticity. We have also become super bargain hunters and thought outside of the box to develop and amass a superb selection of sensory toys and activities to help with his development.

We have a huge web of professionals involved in Bear’s care and monitoring which include – Consultant Paediatrician, Consultant Neurologist, Neurosurgeon, Orthopaedic Surgeon, Consultant Ophthalmologist, Physiotherapist, Occupational Therapist, Dietician, Speech and Language Therapist, Teacher of the Visually Impaired, Portage Worker, Health Visitor, Children’s Community Nurse, Epilepsy Nurse, Compass Team (Palliative Care), Social Worker (Children with Disabilities Team). Bear also attends an awesome Special School and previous to that a Specialist Pre-School for Children with Special Needs (Taunton Opportunity Group) and as a family we receive support and respite from Charlton Farm – Children’s Hospice South West.

This wonderful little man has changed our lives significantly, the dreams we had for him are now unattainable, new goals have been set, different mountains set to climb. He has brought us new strength and taught us so many lessons about what really is important in life, shown us our true friends, and who really cares. We have become knowledgeable, spent hours researching his conditions, the therapies available, the equipment he may need. He has taught us so many things – how to love unconditionally, how to look at the world through different eyes, to slow down, to appreciate the little things, inch by inch, and to celebrate them as if a marathon had been completed, to never say never, to seize the day. He has brought us new, likeminded and now lifelong friends that know what it is like to be where we are.

Although we adore him it is difficult not to feel the financial strain of having a child with complex needs, we have gone from a two salaried income to one overnight and still have to maintain a mortgage and outgoings that were based on this income, it is tough (we have cut back a lot!) but we are managing, just. Bear is a victim, like many, of the ever increasing strained NHS, he cannot access all the equipment and therapies that he so desperately needs as ‘the budgets just won’t cover it’ and therapists case loads are stretched to bursting point. Due to these shortfalls it is necessary for us as a family to try to raise the funds to supply him with the things that are not provided. Over the next few months and years we will need to pay for/buy/commission the following and more – the running and maintenance costs of the inflatable hot tub (as there is no access to hydrotherapy facilities for him elsewhere), private physiotherapy, powered wheelchair, down payment for wheelchair accessible vehicle, communication devices and switches/switch adaptation, ceiling track hoisting system, level access to garden, sensory equipment.

We have in the past, and intend to, organised and run a number of fundraising events in order to supplement these purchases. As part of this we would also like to ‘Pay it Forward’ and give back to some of the wonderful organisations that are supporting us as they too are subject to sufficient funding being raised, without them we would struggle more than we do already and would like to know that they, with our help and support, are able to help other families in the same way that they have ours, we are forever indebted to them.

Lastly we would like to thank YOU, for taking the time to read this, for your moral support and for any support you can offer in terms of fundraising or visiting us at home or in hospital, and for loving Bear as much as we do.