A life in all its fullness

Abbie is four years old and she has pulmonary hypertension, most likely caused by abnormal lung development due to her severe scoliosis. She also has a genetic abnormality, one kidney, ulna dysplasia, leg length difference and physical developmental delay. She is described by most doctors as ‘complex’.

She wears a spinal brace, has a walking frame and a powered wheelchair, takes various medications throughout the day and she has oxygen treatment at night and throughout the day when she is breathless or fatigued.

Life with a child who has both physical and invisible disabilities is hard and feels like a constant fight to help her experience a childhood just the same as her two older brothers, Freddie and Joey (pictured below with Abbie).

After her heart catherisation in 2018, which confirmed she had stage four PH and was in heart failure, her consultant told us to throw everything we could into helping her heart and ultimately her quality of life. This is what we did, with lots of help from all her many consultants and the great PH team at Great Ormond Street.

As her parents, we decided to focus on her being well enough to be able to start school. An exciting and milestone moment for all children and a place we consider a sanctuary away from the difficult scans, blood tests and procedures that seemed to fill her very young life. There are no masks or nameless people at school and Abbie would be able to thrive in the positive, encouraging and inclusive environment that school could offer her.

However, this involved lots of effort from so many professionals to allow everything to be in place for her. The nursery owner who applied for an Education, Health and Care Plan; all her therapists and consultants who wrote supporting letters; the school Special Educational Needs Coordinator who made sure the staffing, classroom, toilet facilities and equipment was organised, ordered and ready; and the whole class team who attended every meeting and carefully listened, taking on board all the medical training required to meet her needs at school.

As Abbie’s parents, we felt very fortunate to have such great support and felt we had everyone on board with our wish for her to start school. Then COVID happened and everything had to be put on hold whilst we were in shielding for four months. At this point we thought all hope was gone and that we would need to rethink our options for her.

However we made it through the storm and we are over the moon to say that Abbie is now medically stable and in September this year our wish for her to start school came true! She is the happiest girl in the world to be able to go to school alongside her brothers, who are equally as proud of her. She attends school part time and we regularly talk with school regarding how she is coping.

We feel fortunate that we had the determination to keep going and the support from a wide range of professionals, especially at a time of such uncertainty, to make starting school for her possible. She has been accepted into a school that is all about the positives and the great abilities that she does possess. It honestly is refreshing! She loves to sing number songs and takes part in her class Zumba. She draws me little pictures and she is even ‘reading’ stories to us at bedtime, rather than the other way round!

We know being at school posing some risks to her health during this difficult time, but we also know that for Abbie, the experiences and education she will miss by not being at school outweigh the risks that can be controlled by a detailed risk assessment in place at school. After struggling at times during shielding we know we made the right decision to send all our children back to the school they love to be and have already missed so much time at.

It really does take a village to raise a child and we will never forget the effort and support, but most importantly the joyful look on Abbie’s face when we pick her up from school. She truly is living life in all its fullness and we are so happy for her.