Please help Lily-Grace have the best head start in life.

You will usually find me in my full time work role, helping to raise funds for Hospice. Currently I find myself needing to raise funds for a personal cause, the extremely rare illness that my daughter was born with ,T9M. Trisomy 9 Mosaic is a rare, one in one hundred million genetic condition. My prenatal testing had been so good that this was a complete shock. Lily was born with a mixture of normal and abnormal cells on the 9th chromosome. Full T9M is not compatible with life, as all the cells would be abnormal. The geneticist explained, that Lily started out full T9M at conception, and a phenomenon occurred where her body "cell repaired" some cells to normal....I call that a Miracle! We have no way of knowing where the abnormal cells are, or how they will affect her. It depends how the genes express themselves. This is a random occurrence and not anything carried by the parents. It could, in effect, happen to anyone.

The day they told us the diagnosis of Lily's condition will be etched into my mind forever. My grief was overwhelming. We sat in a small room with a team of professionals from the hospital. A paediatrician, a geneticist, a counsellor, a Family Liaison Nurse, a close friend, and some other doctors I think, I can't remember. What I do remember was the medical words and long list of possible impairments, abnormalities, disabilities and illnesses my baby may be going to suffer from. Sometimes abnormalities and issues are present at birth, and some develop at any stage of life, the severity depending on the percentage of bad cells in each area. We were told there is no predictor of how these cells could affect her. Some of the known possible issues discussed with us were:-Blindness & Small eye opening, Deafness, Cranial abnormalities, Abnormal palate, Significant dental issues,

Dysmorphic features, Laryngo malacia, Significant respiratory issues

Low immunity, Apnea :obstructive and central, Seizures, Feed aspirating, Setback jaw :micrognathia, Requiring small frequent feeds,

Tube feeds, Mickey buttons, Scoliosis, Lopsided growth, Hyper flexing limbs, Obvious Physical deformity, Hip displacement, Global developmental days, Mental retardation, Renal and genital abnormalities, Limb deformities, Bowel obstructions, Diaphragmatic hernia, Non verbal, Wheelchair dependant

..I remember spluttering through my tears and asking "what about her brain?" I thought maybe I could cope with anything, if at least her brain would be okay? They were very kind and gentle as they told us what the literature said about the possible mental capacity of T9M sufferers, and it wasn't good news. We have since found some T9M children with normal mental capacity! Aha Hope! We are praying and believing that Lily has no abnormal cells in her brain! The truth is there is not much information, or documentation available and every child is individually affected. The families of theses kids are the best specialists to go to for more information, and they were full of hopeful stories! Time after time their kids are defying the odds and achieving more than expected.

In the early days Lily weighed just 1.7kgs (3lb 7), was tube fed and struggled for every breath. C02 built up in her system and her oxygen saturation decreased, her life was in danger. At weeks old a very talented ENT surgeon at starship hospital, operated on her throat and helped save her life. She spent the next few months on oxygen while her saturation levels stabilised. Feeding her has been a challenge! She needed breast milk as she was immune compromised, but was unable to transfer the milk herself. I pumped 3hrly day and night and she was tube fed this during our Nicu stay. I wanted her off tubes, as babies can become reliant, and never eat orally. I took over feeding breast milk in the bottle 18 times a day. She would choke and vomit as her airway was floppy and would collapse...our days were hard. She had breast milk for nearly 6months, it was an exhausting routine....But she was off feeding tubes!!! She still feeds little and often but has reached a normal weight! I had help from the hospital services, and some support hours, but funding has ended now, and we still need help.

To the trained eye Lily's face bears a resemblance to the other children in the world with T9m. To the untrained eye, I believe she looks normal. We like to think T9M kids look more like their parents than their syndrome. There are only four children in New Zealand with this condition.

The hospital were wonderful with their care of Lily and ourselves, we were surrounded by competent caring staff and I can not thank them enough for all they did for us. The after care and support we received once we were home, was what kept me going day after day. I'm sure people thought I must be so happy to be home from hospital, after such a long stay. I wasn't. I was scared out of my mind! She had tubes and alarms, oxygen and medication, and sats machines......and I was responsible for keeping her alive, how could I be trusted with that!!!

We lived in relative isolation for six months to protect Lily from illness. As she had a compromised immune and respiratory system, she was high risk, and even a common cold could see her hospitalised. Children have died from T9M related illness so we had to be so careful.

I love Lily completely. I love her fiercely. Would I change anything about her? You bet I would! I would take away this rare disease that threatens to rob her of a normal future! But I would never want to be without her. I would rather have her just how she is, anyway she turns out to be, than not have her at all. And that is the incomprehensible mystery of a special needs parent. That you would RATHER have this 'high needs, exhausting, difficult, scary, sick, life changing, overwhelming, medically fragile child'? Yes because we know them, and LOVE them, and to us, they are so very, very precious. Anyone who knows me, anyone who dealt with me in the early days after Lily's birth, knows it has been a tough battle for us.... But you see....I am in love with Lily-Grace. Just like I was with my other two 'regular' kids. I am head-over-heels-in-it-for-life In Love with her! It's Because I love her fiercely that I will help her any way I can. That is why I have set up this page for her. https://www.facebook.com/lilygraceamanda