Tristan's Wonderful Transformantion!

Hi Everyone,

I hope you are all well and pain free. I just wanted to share the amazing photos of my boys new chest. Yesterday he had his last check up with his surgeon and here are the amazing results;

Before and After photos:



We spoke to his surgeon about that blatant researcher saying that it sounds like Tristan has Marfans Syndrome, and he said, "Most of the children I see who have Pectus Excavatum do not have Marfans". That truly put my heart at ease. I have not been at all worried about the possibility, as I know Tristan won't have it. Highlighted are the only characteristics that Tristan has to Marfans:

  Marfan Syndrome Characteristics:

• Lung tissue (there may be a pneumothorax, in which air can escape from the lung into the chest cavity and collapse the lung)
• The aorta, the main blood vessel that takes blood from the heart to the body may stretch or become weak (called aortic dilation or aortic aneurysm)
• The eyes, causing cataracts and other problems (such as a dislocation of the lenses)
• The skin
• Tissue covering the spinal cord

• A chest that sinks in or sticks out -- funnel chest (pectus excavatum) or pigeon breast (pectus carinatum)
• Flat feet
• Highly arched palate and crowded teeth
• Hypotonia
• Joints that are too flexible (but the elbows may be less flexible)
• Learning disability
• Movement of the lens of the eye from its normal position (dislocation)
• Nearsightedness
• Small lower jaw (micrognathia)
• Spine that curves to one side (scoliosis)
• Thin, narrow face

So as you can see, my heart is not at all worried. We have been given an appointment to go back to Genetic Counselling on November 7th. So I will let you know the great news then. 

'Positive thinking is the only way forward and the only way to create a better future'.      
                By Rowena Lee Brewer

Love Rowena XXXX

P.S: I had the permission from my son to put these photos on. He wanted to share his transformation and is very proud of his new chest.

More amazing news!!!

Hi Everyone,

I just wanted to share my boys fabulous news. Tristan went to visit Starship Hospital last week about his scoliosis. The Doctor told us that he has officially stopped growing (6ft) and his curvature in his spine will not get any worse. This means that he will not need an operation to fuse his spine.

Oh happy, happy day and may his genetic test about 'Marfan Syndrome' be negative and be just a slip of the tongue by that silly researcher. I have a huge feeling in my heart that he does not have that and I am going by what I feel.

Love Rowena XXXX

Oh Happy Day!!!!!

Hi Everyone,

I hope you are well and enjoying pain free days.

I have some very exciting news to share. My son had his last spine check today for his scoliosis. He has officially stopped growing and his spine curvature has completely stopped. He no longer needs to get it checked and does not need an operation to fuse his spine!!! My boy is going to be okay and I am over the moon and sooooooooo happy.

Love Rowena XXXXX

We are SOOOO much more than our Genetics!

Hi Everyone,

I hope you are well and happy.

This time I am going to be blogging a little bit of anger!!!! Recently, I was asked to be part of a medical study. It was to trial 3 medication to see if it makes a difference to my aortic root dilation. I only have a mild dilation and do not need medication. But I was still asked. I asked what the side affects would be and basically, it is feeling 'letharic'. That is a terrible side affect for a full time working, single parent in a career of teaching 7 year olds. Anyway that is not where my anger comes from.

During my converation I was discssuing my son and about him being diagnosed with Classical EDS due to it being inherited from me. I also said that he had Pectus Excavatum. Very calmly he flippantly said "Oh that sounds like Marfan Syndrome!" I was absolutley floored and just shocked that he would say that with no compassion. He has never meet my son, he has never seen his medical history or anything to do with my son at all. He had never meet me either. To him I was probably just known as 'Trial Patient - 4.3cm dilated'.

I am sooooo incredibly wild at the medical bubble that we have to wait paitently in, for some of the 'Insensitive Medical Practioners' to make us better, to save our lives and to ensure us that we are going to be okay. Last year I went to see a Cardiologist who dropped this 'heart defect bomb' on me. She was so sterile that it sounded more like she was giving me a weather up date. I looked to her for a tiny bit of kindness, a tiny bit of reassurance that I was going to be okay. I said "After this I will be okay though won't I". She leant forward and said "I don't know what else you could die of!!!!!!!!!" I left feeling absolutley small, out of control and not even a person.

I have decided to leave the Public medical system and I am going to a private Cardiologist on Tuesday. I am going to be paying for the answers now, I will pay to see my aortic root dilation from my MRI scans, I am going to be paying for her to listen to me and I am going to be paying for her compassion.

Today I have handled ever single medical procedure I have been through, and so has my son, but I am now done with our lot. This is enough now, there is no more that my son and I can handle, we are done. We will handle EDS for the rest of our lives and we will be incredible spokespersons for this genetic condition, but Tristan will not Marfan Syndrome too, that is not okay. He has just under taken a humungus operation, he still has to have the all clear for his scoliosis and that is it now, that is all. You can mess with me, but you don't get to mess with my baby, he is hands off, he is sacred and we are done now.

UNIVERSE YOU BETTER BE LISTENING..... BECAUSE THIS MUM IS MAD!!!!!!!!!!



Love Rowena XXXXXX

LONDON'S CALLING!!!!!

With all of Tristan and my amazing health news we have decided to go and live a much bigger, more adventurous life. We are moving to London, ENGLAND!!!!

That was where my baby was born. So we will pack up our lives into 2 suitcases and around December 27th we are 'leaving on a jet plane'. Tristan has decided to do an English Literature degree in London and so we are off for him to get his A Levels and then onto University.

I am really excited to be going to a much bigger country, with more people that have EDS and more doctors that know what it is. I hope to meet people that have it and especially people with Classical EDS. Stay tuned for our new exciting adventure to unfold.

Love Rowena XXXXX

More amazing news!!!!

Hi Everyone,

I hope you are all well and again painfree. I know I always add the painfree comment, but I really do wish that for everyone. There is nothing worse than trying to have a wonderful life with the constant presence of pain.

Anyway, I just wanted to scream this from the roof top. Tristan had a mitral valve leak in his heart (like a little flap) when he was 4 years old. He has just gone back for his 10 year check up and it has healed itself and he does not need to go back to a Cardiologist for 10 years. That means he does not need an operation to correct it. I told him it was because I loved him so much, that's why it healed. He was too focused on his play station 3 to answer me and just slipped out a very monotone 'Mmmmm!"

So only one more check up to go now with my boy and that is for his spine. Having scoliosis has meant that his spine has a slight curvature. So having a happy life, wonderful healing abilities and lots of love is the ingredients for my boy being on the mend.

Love Rozee

x x x x x x x x x x

Tristan's operation was a huge success!!!!

Hi Everyone,

I hope you are all well and pain free. I just wanted you to know that Tristan's operation was a huge success. His surgeon Zachary Moaveni was incredible and has created the most beautiful chest for my son. Poor Tristan was in sooooo much pain and the medication from the epidural made him very sick. Vomiting when you have had your chest reconstructed was one of the most painful things I have ever seen.

I honestly did not think that I could love my son anymore than I already do, but I can. He was absolutely incredible through this whole experience and he did not complain once.

Here are some photos of my incredibly brave son:

















Already you can see that his chest is flat and looking very gorgeous. He was just sooooo incredibly brave. He is my absolute hero!!!! So there you are, my boy is fixed and is on the mend.

Love Rowena

X X X X