As the newest member of the WHS family in Australia, I attended the 2003 conference in Toowoomba with my Mother Ellie, my two half-sisters Cheyenne and Indiana .My name is Jesse and I was born in 2002.

My name is Ellie and this is my gift from God-Jesse.

2002 was both a terrible and a wonderful year for my children and me. At the time it was all a blur of medical terminology, fear, emotional distress, sadness, anger and despair. After the initial shock of what lay ahead for them and me I began my campaign to save this child and my family. Thanks to a very compassionate nurse I was introduced to another mother of a WHS child whilst in hospital, who offered me not only support but also my first lifeline to my new family. Thanks to her insight into her son`s life and achievements, and also her strength, I began my challenge.

Bringing Jesse home alone, at 1.800kgs, (not knowing for how long I had him,) when the medics gave me little hope for his survival. As well, raising two other children. I decided I had two choices, to curl up and feel sorry for myself or fight furiously for the future of my little family. The choice is obvious.

Jesse had his first Gran Mal seizure two weeks before his first birthday and had had his first operation at 7 months old. But we were not alone.

Reaching our first conference was the best thing I ever did for myself, my daughters and naturally for Jesse.
After a lot of work on my friend's behalf, and mine, (and thanks to a lot of community assistance) we excitedly raised the funds to attend our first contact with the support group.
We travelled by plane to Queensland and by car to Toowoomba. We arrived weary, excited and apprehensive!

We were welcomed on arrival on the Friday at an informal gathering to register our attendance. All these faces I did not know, and yet all these other faces that looked so familiar. It was incredible, like standing in a room of 10 other Jesse`s. The WHS children all looked like they came from the same family, and yet they also had physical likeness to their biological families. It was daunting but we were greeted with warmth and interest and made very welcomed by all. Naturally there was a lot of interest in Jesse as he was the baby of the group. But as the days went by these strangers became an entity of my family that has made me whom I am today.

I can tell you all, it was the most emotional time of my life. It was reality. As Sharon Campbell can tell you it began the moment I parked my car on the Saturday, the first day officially of the conference. I got out of my car and stood tears flowing down as I watched this lady and her beautiful little girl who had WHS, walk across the road. Did you get the miraculous part? I said, walk! Walk? I was told these children did not walk. It was something I had resigned myself to. That Jesse would just not walk. To me it was the first time I felt hope. Hope that these medics did not know it all. Hope that Jesse could achieve more than was expected.

The first day was spent meeting the 10 families that attended, and for me, questioning all the parents, picking everyone’s brains for information, I did not want to miss a thing. Seeing the degrees of disabilities in the WHS children was both confronting and encouraging. Jesse was just a baby and did what all babies did at that stage. But seeing the other children did make me realise that this was reality. He was disabled. But it was a positive time. A time to express the emotions of the past year, to share these, to be part of and belong in a group somewhere at last, with people who really did understand. I listened to all the speakers, took notes and absorbed all I could. Breaks were good as I checked on my girls playing and bonding with the other siblings, also feeling like they belonged. They were with these children who all new what watching mum leave in an ambulance with their brother or sister on a regular basis was like. Children who knew, that Wolf-Hirschhorn was another normal word at the family dinner conversations.

That evening we had an informal night with lots of dancing and time to relax and share each others stories. Lots of cuddles between the children, (who were now beginning to form close bonds). Games were played, a lovely meal shared and parents passing their precious children around as extended families do at family gatherings. Again Jesse was very popular with cuddle time as he was the bub of the group. Photos were taken and albums of the past two years progress shared.

Jesse & Sam (Hannah's Brother)

Sunday we had more speakers and I must say some beautiful meals. It was all very well organised and a lot of people had volunteered to bring it all together perfectly. The siblings went on excursions and did lots of craft and were also served beautiful meals. There were carers for the WHS children too. Jesse was with me most of the time (he was not in Sams arms), as Jesse was fortunate to be breastfeeding for the first year of his life.

Monday was the Family day We attended an informal picnic where we relaxed and spent more quality time with our new family. I saw some of the WHS children walking, some feeding themselves and others been tube fed. They played whilst parents shared stories and siblings were now bonded as if they had all grown up together. We shared a bbq and the weather shone on us in celebration of our unity. Sadly after photos and exchanges of contact details and promises of a return to our next conference it was time for goodbyes. It was by far the most difficult part of the experience. Tears flowed openly between parents and children alike. We were safe in our little community but now reality was upon us and we had to return to our homes in different states. Return to the real world where we were not always accepted or understood in our plight to help our families survive.

Indiana (Jesse) & Savannah (Karyn)

Trying hard to prolong the inevitable separation we joined our host family for a last dinner that night before another tearful final farewell. My two beautiful girls were very distraught to leave the friends they had made knowing these children understood how their lives had changed too. But we knew this was the beginning of a very precious family tradition, which we now make every two years.

To everyone who attended, to the host, the volunteers and to my beautiful son who without him in our lives we would not be so fulfilled, thank you.

Ellie Christoffersen.

Jesse today at 3 years old!

Many Thanks To Ellie for sharing her story with us