I was diagnosed with CVID 16 years after I started to get sick all of the time with infections and viruses. My GP referred me through to The Alfred hospital here in Melbourne when pathology came back showing that I needed to be treated with IV antibiotics.

It was then that my luck turned, although a week after my first appointment when I was told that I had a serious problem with my immune system I was shocked.

I worked with a Social Worker to learn how to embrace my diagnosis and live as well as I can with it. I had my first infusion of IntragamP in November 2006, with those and taking onboard the physiotherapy regime – I swim 1 km in a local pool 5 days a week and do at least 30 minutes of exercise on the days that I don’t swim – there is no comparison between now and before I was diagnosed, to put it simply I have quality of life again.

I see my medical care to be a team effort between my doctors, the team at the hospital, blood donors and myself – and we all work together for my benefit and I benefit greatly from it.

I work online for a large Australian server and I also have fingers in a number of different organisations as a volunteer, one of which is the blood bank. I work as an ambassador speaking at corporate events, High schools, to employees of large companies and to the media. 

With permission, on my own I head into a donor centre every fortnight to speak to blood donors as well as spending time at my local town hall when the mobile blood bank visit every 3 months.

Words cannot truly express mygratitude to the hundreds of humble blood donors that I meet who tell me that what they do for people like me isn’t a hard thing to do.

My reasons for being a blood bank ambassador are firstly to express my gratitude for the liquid gold that makes such a huge difference to my life (12 whole blood donations or 6 plasma donations for my 600 ml), secondly to help the blood bank with donor recruitment and PR and to also help increase awareness about PID. My other motivation in life is to live a life deserving of the time and effort that goes into keeping me well.

Jackie Murphy - IDFA Volunteer State Coordinator, Victoria

When Ivy was about six months old, I knew things weren’t right. She’d had a few middle ear infections but it wasn’t until she and her twin brother Noah caught RSV that I knew, without a doubt, that things were different for Ivy.

His illness was acute but short and Ivy, well, she just never seemed to be well, after that.

Our journey to diagnosis wasn’t easy. I’m sure that there are many of you out there who feel the same way. For a long while the doctors kept telling me there was nothing wrong, that she had been a premature baby and that her system was just taking its time to work things out, that I was being over protective and anxious, even that I was making her sick but we had a family history with immune deficiency and in my heart I knew that Ivy had it, or something like it too.

I had days of sheer panic that nobody wanted to help Ivy feel better, that I was never going to be able to help her, that she would always be sad and sick and in pain.

By the time of diagnosis she had the beginnings of serious heart disease and lung disease along with a horrible disease, which caused her little body to erupt in blisters that were very painful, along with all of the infection.

It was awful.

Although Ivy’s pediatrician and I sometimes don’t see eye to eye, I think that he has been paramount in diagnosis. We are all on this journey together, learning more with each new issue Ivy presents.

I’ve challenged his want to stay with Ivy’s case but every time he has remained steadfast and patient with me when I have been angry, overwhelmed and anxious and eventually (and with evolving test results), he came to the same conclusion that I had.

Ivy had some kind of immune deficiency.

Things reached a head when Ivy was 18 months old. Our family was really suffering under the stress of everything. I had been working as a midwife but needed to resign because I was letting my colleagues, my family and Ivy down. I couldn’t juggle it all. David became the only income earner and things became tight. The other children were a mess of worry and Ivy was becoming more unwell with each day. We spent a lot of time in isolation because it seemed that every time we went out, Ivy would pick something up and end up in Accident and Emergency days later.

By the time Ivy met her immunologist she had spent so much time in the hospital with sepsis, otitis media and pneumonias that she referred to it as home.

It was in March 2008 that everything came together, having seen the immunologist, a skin specialist, and several other doctors, had various tests and biopsies, Ivy was diagnosed, with Ectodermal dysplasia, which is a genetic disorder and can cause immune deficiency, specific antibody deficiency (and just this year with neutrophil dysfunction too). She also came up positive for an autoimmune disease – Pemphigus (which causes all the blisters). In one way it was extremely sad that Ivy had all of these issues but it was also a relief to know that there was something that could be done to help her.

We tried several other medications before Ivy was finally approved for IVIG in the September. She initially started having it every four weeks but moved to three weekly about a year later.

We have seen so much improvement in Ivy’s life, although she still gets sick and needs time in the hospital; Ivy lives her life to the fullest. She loves to dance most of all and she’s started school this year, which is something she loves too. I love that first week after infusion day, when she has all the energy in the world. Nothing beats seeing her like that.

Family life is better too and the older kids have gone back to their after school activities and they can go places and have friends over, without having to worry so much about bringing home a virus or infection.

Things have settled down a lot since those first couple of years and we are very grateful that Ivy is able to have the IVIG and thankful to the people who donate blood and plasma.  Ivy has been an ambassador for the Australian Red Cross Blood Service since 2009. It’s a small way to be able to give back; after all we have been given.

We’ve spent a lot of time in the hospital this year, due to constant line infection. First with ports and then with a Hickman’s line. Last week we had that removed from Ivy, in the hope of stopping the infections following another septic event. Peripheral access is a problem so we are hoping to start subcutaneous immunoglobulin within the next month or so. I’m keeping everything crossed that this is the answer for my girl.

Our family has learnt so much from Ivy’s experience. We’ve become a closer unit. We’ve had to. We have learnt ways to cope with stress and worry in a way most families in our community have never had to. My older children have learnt patience and empathy and know first hand how overwhelming disease can affect a person emotionally.

I started a blog months before Ivy became seriously ill and being able to write everything down has been the one thing that has kept me sane through everything and through the power of the blog I’ve met others who are going through similar things to Ivy and I. People who have become trusted friends. Without support and community, immune deficiency can be a very lonely road to travel.

I wouldn’t wish immune deficiency on anyone but we have met some wonderful people and learnt so much while we have been walking this journey. We have also learnt that our family can withstand a lot as well. I’ve learnt a lot about myself as I’ve fought to find answers and a lot about Ivy’s strength and tenacity too.

She is our little lion heart.