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Alfie was born at York Hospital in July 2008 and soon afterwards we were told that he had a problem with his heart. Within hours of his birth he was critically ill and was rushed to Leeds General  Infirmary where it was discovered that he had a rare heart condition called transposition of the great arteries (his main arteries were in each others place). When he was about 10 hours old he needed a procedure called a Balloon Septostomy to stabilise his condition. When he was five days old my wife was finally able to hold him for the first time.  When he reached 16 days old he underwent an 8 hour open heart operation to correct his heart defect. Two weeks after this we were discharged and happy to be home. Unfortunately at Alfie's first outpatient appointment we were told that his heart was still under significant pressure. We were admitted for an investigation in what was supposed to be a fairly routine procedure which should have involved a 2 day hospital stay. Unfortunately during this procedure Alfie's heart stopped. Thankfully due to the skill and determination of the doctors Alfie was stabilised, although he remained critically ill. It was during this procedure that it was discovered that Alfie suffered from a very rare condition called Pulmonary Hypertension.  Alfie was so unwell that we were told to prepare for the worst and put in touch with the local children's hospice. Alfie required breathing support for 9 days and was heavily sedated during this period.  He remained on intensive care for two weeks and thankfully responded incredibly well to the medication and was described as a miracle by the medical staff. He returned home but needs to take several medicines, one of which he takes six times a day to control his pulmonary hypertension. 

More recently in August 09 Alfie collapsed at home and required prolonged CPR by our neighbour, paramedics and A&E staff. Eventually his condition was stabilised and he was transferred to Leeds General Infirmary. It was then doctors discovered that Alfie's pulmonary artery had grown to such a size (due to the pulmonary hypertension) that it was pressing on the back of his trachea and bronchi. This had effectively caused his airway to collapse. Alfie needed to be ventilated and required lots of help as his condition was unstable. Again during this crisis the doctors warned us that Alfie may not survive as there was were no treatment options available to treat such a serious problem. Again we were told that it would be a waiting game and it was up to Alfie. Again to everyone's surprise Alfie was successfully weaned off the ventilator and transferred to the ward after 8 days on intensive care. After a further 5 days Alfie was discharged. We have been warned that there is no guarantee that Alfie will remain well. He has once again defied the medical profession. They continue to be surprised at how well Alfie is on a day to day basis considering his health problems and the amount of time he has spent in hospital in his short life.

 Unfortunatley in December 2009 Alfie contracted a respiratory virus and developed a secondary chest infection as a consequence. Alfie spent 4 weeks in York Hospital as a consequnce of this, including Christmas and New Year. After 5 days at home Alfie was rushed back into hospital after developing another viral infection. Following these illness a review by his specialist from Great Ormond Street revealed that Alfie's heart was struggling more than ever. We are now waiting to hear when we can go down to Great Ormond Street Hospital for more tests and investigations. It is hoped that Alfie will positively respond to more drug therapy.   

Pulmonary hypertension is a disease in which the blood pressure in the arteries in the lungs elevates putting pressure on the heart and reducing the amount of oxygen that is able to reach the tissues in the body.  Unfortunately there is no known cure, but there are effective treatments that can help sufferers if they are diagnosed early in the disease progression. Untreated, PH has a worse prognosis than many forms of cancers.

Alfie's new health problems are a direct result of his pulmonary hypertension and his best chance is to effectively treat the cause of the problems. This latest episode has highlighted the urgent need of continued research into pulmonary hypertension and the need to develop more effective treatments. In the last 10 years the treatment of pulmonary hypertension has changed beyond belief and survival rates have increased massively. It is not unrealistic to think that in another 10 years the treatments available could radically change the nature and severity of the illness.        

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