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

Closed Cause page created in the Kiwi Kids category by Amanda Davies for "Lily-Grace Davies"

  • $13,770.00 donated
  • 129 generous donors

Please help Lily continue to thrive and keep in her warm and dry home - Trisomy 9 Mosaicism.

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Early Childhood Disability Sick Kids

Lily-Grace has a one in one hundred million medical condition, Trisomy 9 Mosaicism. T9M is a rare random condition that can affect her ability to develop normally and cause a long list of medical issues. We don't know the long term prognosis for Lily, but we try to believe the best. We know excellent healthcare is important early on, to catch health issues before they become life limiting. We do know that early intervention, particularly in the first two years, is essential for her to reach her development potential. These kids do not necessarily follow a normal development pattern, for example with taking steps, which we need help with. We want Lily to walk, talk and play like normal children. Lily has missed out on interactive and educational baby groups because of her low immunity and increased risk of infection. Sickness delays development in any child, but particularly so with T9M kids. We have relied on therapists who come to our home in order to keep Lily well. We need services and we need support. We need therapists and skilled people. We need to pay to have Lily looked after sometimes. So far, she has only ever been left with carers who have nursing training. This care is expensive. The hospital services and government care have been excellent and I'm extremely grateful. However they have waiting lists, and more patients than resources, there is just not enough to go around.

Lily will need funds for dental work as T9M can give children very small jaws and unusual teeth. I want her to feel as normal as possible. Her left eye is compromised but may be able to be fixed with laser treatment. Her left side seems affected and requires extra physio to develop normal function. Right now I find myself in need of feeding advice and a dietician. Lily doesn't fit the criteria for a hospital one. We are trying to learn and teach her sign language ( I would like to go to a group for that) but also believing she will be verbal. This page has been established to help fund her ongoing development costs. Lily-Grace is a gentle sweet wee girl who loves dolls and cats, books and songs, bubbles and bath time. She loves colours and fabrics and baby Einstein puppets. Her favourite songs are Five Little Monkeys and Im a Little Teapot. She tries to find fun where she can and likes to smile. She wants to be happy despite her issues. She has sensitive eyes and doesn't like bright light. She frightens easily with noises and doesn't like to be left alone. She doesn't roll or crawl, but she can sit up and is enjoying weight bearing on her legs. She pulls the most hilarious faces, some photos I have put in gallery. Please help us to support her therapy and give her the best head start in life. Her smiles are so worth seeing Thank you for your interest. I hope I can help raise awareness for those living with T9M, especially for the amazing 4 unique T9M Kiwi kids. Thank you for reading this, thank you for your support. My hope is that Lily will defy T9M. That she will be a hope to any future kiwi kids that are diagnosed with T9M. It's easy to fall in love with Lily-Grace, after all she is One in One Hundred Million!

http://www.lily-grace.co.nz

https://www.facebook.com/lilygraceamanda

https://lilygracedavies.wordpress.com

http://www.stuff.co.nz/national/health/67267860/uncertain-future-ahead-for-infant

http://www.rarechromo.org/information/Chromosome%20%209/Trisomy%209%20mosaicism%20FTNW.pdf

Page created by:

Amanda Davies

Individual
Auckland

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

All funds raised benefit:

Lily-Grace Davies

Funds will be paid to a verified bank account of Amanda Davies on behalf of Lily-Grace Davies.

  • $13,770.00 donated
  • 129 generous donors

$13,770 donated

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This cause page was created on 05 Mar 2015 and closed at 00:00 NZST (UTC +12:00) on 21 Apr 2017.

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