A letter from the parents of ‘Our Little Boy.
A letter from the parents of ‘Our Little Boy. `Our little boy’ is now one and a half. Since being a few days old, he has had regular apnoea attacks. For an unknown reason, he stops breathing while he sleeps and is unable to recover without assistance. Currently, this can be up to 5 times a night. He has spent many days and weeks visiting the Children’s Hospital and undergone numerous tests! Despite all this, we are still no nearer finding the cause of his ‘centralised apnoea’. On top of this main issue, ‘our little boy’ has an aversion to eating, caused we believe from having wide food intolerances. It hasn’t helped that he has reflux issues that started at birth, which requires three medicines each day to keep it under control. He has developed a dairy intolerance, so from an early age has had to drink special baby milk. As he is under the: gastro, neuro and respiratory consultants, dietician, speech and language and a general paediatrician … we hope ‘our little boy’s’ condition will continue to be explored. NARA have supplied him with an apnoea monitor since he was a few weeks old. We are immensely grateful for this life-saving device. The small contribution we are able to make to NARA each year through fundraising, is no way near the value of having the monitor.
‘Our little boy’ has recently been granted a two day placement in a local nursery, allowing his mum some time to rest during the day. His sister has also been allowed to go, as a treat for the disruption caused to her three year old life. As a family, we are used to light sleeping, listening out for the apnoea alarm. Even his sister wakes and knows what is happening. Today (June) at Nursery, his carer also experienced finding him blue in his cot, alarm ringing and not breathing. Her quick action brought him back, therefore saving his life. Do you know … despite this, ‘our little boy’ is amazing. He thoroughly enjoys every day, loves laughing, playing and getting up to mischief!
‘Our little boy’ is attached to his NARA monitor. It provides security for him and he loves to wear it in his small rucksack. When it is off him, if he begins to get tired he ‘clicks’ making the monitor noise until it is returned to him! This shows the importance of such monitors, as they alarm to save lives and provides a level of security for both parents and child. NARA have looked into more complex monitors that record what is happening in the child’s body at the moment they stop breathing. This potentially could be the answer to children like ours. This is why our friends, family and colleagues are keen to fundraise at any opportunity to provide monitors for babies like ours.
This new, more complex device is a Data Monitor which not only alarms when baby stops breathing, but also records vital information, i.e. pulse, heart, oxygen levels etc. which, in turn can be down loaded onto a Consultant`s computer which assist’s to analyse the causes of many medical problems. The basic cost of this equipment amounts to £5,000 plus any accessories that is needed to go with it. This amount, on top of the everyday medical equipment and support that is required by NARA is hard to find. Families, friends and local communities, around `Our little boy`, have all started to raise money toward this device, which could ultimately identify his condition.
As Chairperson of NARA I had pledged to raise £8000 in this Olympic year, unfortunately, due to circumstances beyond my control this has not so far been possible. Is there a way YOU CAN HELP? Any kind of fundraising, donations, sponsorship or grants, however large or small, to help me reach my goal, our imagination is the only limit. Please help us to support ‘our little boy’ and many others out there who struggle to do what so many of us take for granted that is ‘To Take a Breath’.
An update on ‘Our Little Boy’. He has been poorly over the past few months and has recently been diagnosed with a condition called ‘type 1 Chiari malformation’ – Usually, the lower parts of the brain are contained in a space within the skull, above the level of the foramen magnum (opening at the base of the skull), these brain parts are pushed downwards because they are too big for the skull. When parts of the brain are pushed out of the skull towards the spinal cord, this can cause pressure at the base of the brain and also block the flow of cerebrospinal fluid (CSF) to and from the brain. This condition can cause pain, swallowing difficulties and sleep apnoea, to give just a few symptoms. ‘Our little boy’ can stop breathing up to 5 times a night, if like most little ones he gets a bug or virus, this can make his apnoea attacks worse and he has stopped breathing between 6-7 times a night. Without the monitor provided, Mum or Dad would not know that he stopped breathing so wouldn’t be able to help him. We are looking to raise funds to help more babies, who, like ‘our little boy’ need help because they stop breathing.
Thank you for taking time to read this, please email me if you can help.