Finding her
brave
Abbie Hampshire has lived with PH since 2018. Now five, she is making the most of life with her health conditions, as mum Andrea explains…
Abbie at hospital
Relaxing at home
L
iving with pulmonary hypertension is hard and we know that supporting a child to live their best life with PH is even harder. Every normal routine is affected and trying to keep to time is near impossible. Ask any of us; it feels like we are living in organised chaos every day and we wish we had the arms of an octopus. But we never stop trying, fighting, supporting and encouraging to make sure our children live a near-to-normal, happy life. We have been on our PH
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journey since 2018 with our five-year-old daughter Abbie, and it has been a bit of a rollercoaster since her diagnosis. She also lives with severe scoliosis, lung disease and delayed physical development - to name a few. We still don’t know why she has the degree of PH that she does and since 2018 she has undertaken countless tests and scans to find a cause, but to no avail. This means it could be a genetic cause and it also means that her PH will progress, get trickier to manage as she gets older, and could be life-limiting. We have locked that devastation in a little box in the back of our minds and now focus all our attention on hope for the future and making sure Abbie and her two older brothers are happy in their present lives - that they feel supported, and that Abbie has the emotional resilience to tackle what challenges life will bring her. We value our home life and the stability and safety net it gives to her, and we encourage the boys to join in with activities and clubs for their own wellbeing. School, church and community youth and sports groups are all good influences in their lives. So, she goes to mainstream school every day. This is important to her and something we have valued as a great achievement. Our morning routine is unlike many doing the school run as she needs to be supported to get dressed, refasten her spinal body brace, toileted, medication given and encouraged to eat breakfast. It all takes longer than normal as she needs to do everything at her pace. She also arrives at school with what
feels like everything but the kitchen sink. She brings with her school bags, a medical bag, q walking frame and a powered wheelchair. She is greeted by a teacher from her class when we arrive who gives her a welcoming ‘hello’ and she is helped into school, barely waving goodbye to me as she goes in. In school she also has a supportive chair, oxygen concentrator and access to an inclusive nurture room for when she gets a bit fatigued. They also know to give me a call when she is struggling to manage so she never ends her day feeling like it was too much. Her mental
“We take the little wins as big celebrations and enjoy them” health is good because she has positive relationships with adults and children around her, she is encouraged to talk about how she feels, and takes part in school life as much as possible. Attending many hospital appointments has just become another part of life. Abbie does find them upsetting and her fight mode will kick in despite the wonderful work of the doctors, nurses and play-therapists who try to make the experience easier for her. She is well-known in many hospitals in North Yorkshire and of course at Great Ormond Street. We often look for our ‘brave’ before we step through the doors. We try to talk about being brave as something
