As Tamesia has just turned 16 and our time with Xavier will be coming to an end, I thought it was time to put pen to paper.

Meese, as everyone calls her, began her life on 17th February 1993 at the Mater Mother’s Hospital. We didn’t know then that we would get to know the Mater as well as we do today. From doctors telling us she didn’t look anything like us, to her eyes being too far apart and almond shaped and ears are too low. We didn’t know what to think. My husband, Cliff said whatever is wrong, she is ours and we’ll love her. And that we have. We have never been given a diagnosis (an unknown syndrome) after having many tests done over the years.

Meese was tube fed at birth as she couldn’t suck. We eventually did get her to feed orally up until she was about 3 years old. She never enjoyed eating, as she was always screaming, vomiting, and breathholding. She was diagnosed with gastro reflux/hiatus hernia along with low muscle tone. She had a gastrostomy put in, and a fundoplication done to help ease the reflux.

An MRI of her brain revealed she had an Arnold Chiari1 malformation and an Arachnoid cyst in her left temporal lobe. There was nothing that could be done for this, and we were told to keep a check on any changes. A squint was picked up in both eyes, and after a year of patching, an operation was done on the muscles of the eyes.

After several bouts of ear infections, grommets were put in, which was very successful. At 3 years of age the physio picked up the start of scoliosis. At the age of 6 a sleep study revealed she had obstructive sleep apnoea and epilepsy. Then came the many trials of seizure medications to finally find a concoction that helped Tamesia.

Our visits with the spine team of doctors started with yearly visits, then 3 monthly visits when it was revealed Meesie’s scoliosis was getting worse. What do we do? Have surgery or not? The scoliosis would eventually crush her organs on her left side if we didn’t. So on her 12th birthday the doctors operated and rods were inserted down her entire spine and anchored to her pelvis to stop it from rotating. We couldn’t celebrate her birthday that year. Meesie got very sick afterwards and we thought that we would lose her. She had nerve damage to her feet and after 3 months in hospital we came home.

Another couple of years on and her feet had to be straightened and pins put in. She got post-op pneumonia again and her heart was tachycardic. The cardiac doctor told us she has a heart condition called Wolff Parkinson White Syndrome which causes her heart to race very fast. Tamesia’s sleep apnoea has gotten worse and we have been told there is nothing that can be done.

We know that we will not have Meese forever, but while she is here we will always give her unconditional love and make sure she is as comfortable as she can be. We have shed lots of tears over the years but also joy just to see her laugh or get that look in her eye when she wants to kiss you on the cheek. She has a weird sense of humour and loves anyone in a silly hat.

We would love to thank all the staff over the 14 years who have been there for us. Too many to mention. It has been lovely for Meesie to go along to Kids Club in an environment that caters for her needs. You will all be missed. Good-bye and thank-you from the bottom of our hearts.

Bronwyn, Cliff and Meesie Brown