so here is a little about Maylee's journey so far. Maylee was born at 36 weeks and immediately needed help to breathe. She also needed an emergency blood transfusion. After a couple of days Maylee deteriorated extremely quickly and had a number of tests done to try and figure out why. The outcome of the tests didn’t give Sophie and Alby (Maylee’s parents) any answers, and their local hospital couldn’t physically help any more. She needed specialist help and fast, so was transferred to the Special Care Baby Unit at the Royal Victoria Infirmary nearly 100 miles from home. Unfortunately Maylee was not stable enough to make the journey on the machines helping her to breathe, so they had to put her on life support to give her a chance to make it to the hospital. Her parents were unable to accompany her in the ambulance and had to travel alone in their car. The journey felt like the longest drive of their lives. All they wanted was their baby girl in their arms. Tests revealed some abnormalities in her heart, but nothing that would explain the severity of her breathing difficulties. Further tests under anaesthetic, which is a risk to small babies, showed that Maylee has 4 problems: vocal chord palsy, bronchomalacia, tracheomalacia, and pulmonary hypertension. All of which affect her ability to breathe, and therefore her heart has to work extra hard to pump blood to her lungs. In a way, her parents were glad the problems had been identified, but were heartbroken to hear just how poorly their little girl was! They had a million questions: “How do you fix it?” “When will she be better?” “How long will she be like this for?”. No one could answer these questions, as they just didn’t know! It was extremely difficult to accept that no one had any answers. In spite of being diagnosed with all these problems, she went home after nearly 3 weeks in the special care baby unit with absolutely no support - no oxygen or anything. Her parents thought everything was going to be OK. Little did they know the worst was yet to come. After just over a week at home, Maylee seemed to deteriorate drastically and was struggling to breathe, so she was transported by ambulance to the local hospital, but her problems were so severe they couldn’t help her, so she was taken to the Specialist Care Baby Unit again. After nearly 2 months, she was ready to go home, but not the way her parents expected. She needs oxygen 24/7 and continuous positive airway pressure (CPAP) therapy at night. From then on they knew life was going to be totally different for the family. But Maylee was now getting the extra help breathing that she so desperately needs. Maylee has had a couple of episodes where she stopped breathing altogether, but her Mam and Dad have had training, so know exactly what to do. And my gosh they do it well! Maylee couldn’t have wished for better parents. They have adapted to the new circumstances of their family life like a duck to water. I’m so proud of them. Although they are doing well, going out of the house can be extremely difficult due to the sheer weight of the oxygen tanks/cpap machine and sats monitor. In addition, she supply of oxygen only lasts a few hours, so they cannot go on day trips or spend nights away from home. We are aiming to raise money for them to be able to buy a portable oxygen concentrator as this will be a lot easier to carry around and will generate a constant supply of oxygen so they never need to worry about running out or lifting heavy tanks. These portable concentrators cost £3000 each, which is way beyond their financial means. Because they haven’t got one of these, they had to cancel their first ever family holiday. We want to raise as much money as possible to be able to give the whole family a better quality of life by purchasing the machine and helping towards the cost of a getaway. Maylee has two older brothers - Brynlee who is 3, and Mayson who is 8. They both understand why the family can’t go away from home, and are just amazing with her. They deserve to live as normal a life as possible just as much as Maylee. So please help us raise as much as we can to help this loving family, who have all had to adapt to a different lifestyle. Every donation little or large is greatly appreciated and one step closer to the family being able to make forever memories. ❤️