In March 2011 Hannah was diagnosed with Idiopathic Arterial Pulmonary Hypertension (PH for short). This is a rare progressive condition with no cure. It's aggressive and unpredictable causing high pressure in the lungs and putting huge strain on the heart leading to premature death. She is under the care of Great Ormond Street hospital who see us every 3 months. Currently there are no licenced medications for children with this condition so we don't know what long term effects the meds she takes may have. She has to endure monthly blood draws as one of them can seriously effect her liver. They all have side effects which hannah has to cope with daily. Living with PH is hard on Hannah many of her friends don't really understand as she looks so normal on the out side so when she dosn't want to play tag or run around the playground or needs to take a time out they often make fun of her saying she a bad looser or is faking it to get out of being on it. So she tends to sit on the side lines and just watch or opting to stay in and help grown ups to avoid it. She can't go to the park or play out on her own with her friends like other children her own age because she is prone to fainting (syncope) without warning due to her condition. She dreams of having her own space, where she can have friends round away from her little sister who she currently shares a room with, this greatly impacts on her also making her tired and grumpy.

Having PH feels like you are taking each breath through a straw with a peg on your nose. Easy some might think, Give it a try then climb a flight of stairs and see how it feels, PH sufferers feel like this most the time and just small everyday tasks we all take for granted can zap the energy right out of you. This leads to an angry, scared and anxious girl who desperatly needs her own room to escape to and deal with all life has to throws at her in her own way.

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