Harper-May has digeorges and has multiple disabilities in her 7 months of life 5.5 months were in hospital and there will be many more visits and surgeries to come.

Harper-may has an unsafe swallow as well as 7 other major problems and needs a life saving suction pump which is second hand, smells of mould and fails resulting in a 999 call and the ambulance leaving their own pump putting and ambulance out of action or hospitalization as her life is at risk without it. Her family been told that they have to buy Harper-may s equipment if they want new items as the pcn will only provide what they have which are second hand, which itself is a risk to a special needs child with immune problems. She needs alot of special things and also needs 24 hour care, she needs special wedges, suction, feeding equipment plus much more. This is heart breaking as a family, its a life long condition that can't be cured because it's a missing chromosome, (22q11 deletion) they have continued worry that her equipment needs are refused by the nhs or the timescale for referals for such equipment is ridiculously long. Without these Harper-may s life would be non exsistant . She is ng feed and is on 24 medications a day all through tube, she's awaiting open heart surgery,. surgerypossible throat surgery and many other throughout her life.