Help us share Arabella's story, living with APDS.

Hello, my names Tamsin. I am the mum to a beautiful little girl called Arabella. From the age of 1 Arabella became very poorly and i was constantly up the hospital trying to get help for my little girl. Finally 7 years and two hospital referrals later we were given a diagnosis. Arabella was diagnosed with a condition called APDS, also known as Activated phosphoinositide 3-kinase delta syndrome. This is a genetic disease which can lead to lymphoma. We had a horrible scare of this shortly after our diagnosis and arabella had to undergo surgery to remove her lymph node, fortunately she had an infection which we managed to treat with iv medication. We have had constant hospital visits and admissions due to infections where Arabella’s immune system is compromised. She is under great Ormand street and The Royal Brompton and is currently receiving the best care possible. My main goal is to raise as much money and awareness for Arabella’s condition and other immunodeficiency’s. It’s had such a big impact to our family life and has affected Arabellas ability to learn and maintain friendships at school due to her being too poorly to attend when she comes down with infections. She currently undergoes immunoglobulin replacement therapy and is on a clinical drug for compassionate use. Going on the drug was the only option for Arabella to maintain a somewhat normal life as due to her ethnicity it has became almost impossible for her to find a match for bone morrow which would completely cure her. Great Ormand street and The Royal Brompton trained me how to do antibody replacement therapy and iv medications at home meaning we have more freedom and comfort in terms of recovery.We want to offer support and help to any family’s going through hard times in trying to help their children. APDS causes lymphoma if left untreated and many children who have reoccurring lymphoma and immunodeficiency symptoms could have the disease and are completely unaware. One of our main goals is to add APDS to the heel prick test, we are hoping we will have support with signatures so we can take this to parliament. Because of this reason we would love to raise some money for this amazing charity, so we can help other families and children who are also suffering. Arabella has always been a happy girl and is always smiling. On the front of it she looks like a healthy 8 year old girl. But she has many problems which affect her everyday life. We want other parents to know that they are not alone, we know our children and we know when something is wrong. Speak up and say it with your chest, it’s been 7 years and we are finally where we are now because I fought as hard as I could. So if you’d like to donate, we would be forever greatful.

Thankyou for taking the time to read our message,

Tamsin x