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Our newborn was diagnosed with a rare genetic syndrome called “Alfi Syndrome” or 9p Monosomy.  Hope, Joy, Love

The “hearts” all started almost 7 years ago with the birth of my daughter. She is the youngest of my three children and the only girl. About 2 months after she was born she was diagnosed with a rare genetic syndrome called “Alfi Syndrome” or 9p Monosomy. There are only about 350 cases in the world and very little about it is known. It affects both the physical and mental capabilities and the prognosis was not very positive.

We weren’t expecting news like this. To us; my husband, our two sons, and myself, she was our perfect little angel and did not show any signs of something not being normal – except for a boney ridge on her forehead. At that point, we were not sure what the future would hold for Brynn or the rest of our family. I even remember contemplating if I would paint anymore. I had had my own business, faux finishing and doing murals for 4 years now and pretty much worked painting full time. I didn’t know what care she would need. I didn’t know if mentally or physically I could handle this. I called my Mom and told her I didn’t think I would paint anymore, and she said, “I don’t think that is a good idea – I think you need to paint”. Those are some of the best words I’ve heard to date.

About five years ago I was asked to do a painting for a cookbook cover to raise money for the 9p Monosomy organization. I did several renderings and they chose one that was a plate of cookies and a coffee mug with a 9p- in a heart on the mug. I had also done a rendering of just a large heart with the letters 9p- inside the heart. I loved the colored pencil drawing so much and the thought behind it that I started a series of paintings for her. I used to get so many comments on how beautiful the hearts were that I decided to paint them without the 9p- letters. I sold the first one three years ago at an art show. I sell them in a gallery in Tampa, been commissioned to do them and I’ve been featured on TV painting them. It is so hard to describe – I love painting and I love doing murals, but when I paint the hearts, they come from a place deep inside that none of my other paintings can touch. It has been an amazing experience. Not just the paintings, but the journey of my daughter.

My daughter turned 7 years old in May and has amazed us all. She has undergone many surgeries, (some major, some minor) in her few years, but has far exceeded the expectations that anyone had told us. She is so full of love and hope and joy. She can bring a smile to your face on the worst of days. She is one of the happiest children I know and she touches people in a very special way. She can really make you appreciate the things that are truly important in life.

They say God only gives you what you can handle. I think we all look back at our lives and think we’ve made some mistakes, some poor choices, wish we would have done things differently, etc….but since I’ve had her, all I can think is that I must have done something really right to have been chosen to be blessed with her.