Stem Cells and Peace

I have more photos from our trip:

These are the photos that I took while we were in Dominican Republic for Nathan’s 2nd stem cell treatment. The hotel was all inclusive with lots of entertainment and activities and we had such a wonderful time.

Something finally shifted for me. After getting close to a nervous breakdown I realized that I have to take care of myself, slow things down, and remember what’s important – which ultimately, is Nathan’s happiness.

During our time in DR I really worked on relaxing (I know I know what a contradiction), I worked on remember what’s important to me, I worked on remembering who I am, who I have always been.

And the most important realization I’ve had is that no matter what happens I have everything I need. I worry and stress out about all the things I believe Nathan needs but ultimately he has everything he needs and so do I – people who love him, health, happiness.

So things have been a lot more enjoyable in our neck of the woods these days.

Since we got back, I’ve been trying to continue with a slower pace, trying to relax and enjoy Nathan more, and realizing that things will be as they will be.

I remembered that ultimately I can’t change anything, that all I can do is my best and then let go and have faith. I’d forgotten what it felt like to drop the delusion of control and just having faith, knowing that I have no ability to change things, that all I can do is have faith.

So that’s how things are going for us. We’re getting ready to go to Montreal next weekend for ABR. We are excited to get away and hang out together all day – the 3 Musketeers. We have a lot of fun together.


  1. Hi, my names Hannah and my mum & step-dad (Jayne & Rob) met you on holiday and told me all about your gorgeous little boy. I thought i’d come on his site and have a look around and just thought i’d say he is absolutely beautiful!! My son Harvey was born with a genetic condition called Tuberous Sclerosis Complex and Epilepsy and then went on to develop West Syndrome (a rare and serious form of epilepsy) and a heart condition called Wolff-Parkinson-White Syndrome. We don’t know what the future holds for him, and like yourselves, all we can do is pray and enjoy him and make the most of what he can do, rather than focus on what he can’t do. He will be turning 1 on saturday, and considering the doctors didn’t think he would make it to a month old, to get to his 1st birthday seems to be somewhat of a miracle!! He can now laugh and smile, something which he couldn’t do for about 8 months of his life, thanks to his different medications he now has his seizures mainly under control and is starting to develop. How has Nathan’s stem cell treatment gone? Harvey is as developed as a 3 month old baby and can’t play with toys or anything like that yet, and just like Nathan one of his favourite things to do is people-watch! he could sit there for hours on end and just watch people, he is really interested in faces more than toys! How is Nathan’s development? He sounds like such a lovely boy and i have been told about how amazing he is!!
    It would be nice to have a chat to other parents who have similar things going on so i will leave my e-mail address at the end of this message so if you want to get in touch then i would like that very much! Also where did you get Nathan’s pushchair from? Harvey has a seat called a Panda seat which has neck and back supports but he can only use it in the house and we have to bulk out his normal pushchair to make it more supportive for him as i can’t seem to find anything suitable for him.
    Sending you all my love and prayers,
    Hannah Brown & Harvey
    my e-mail :

    hope to hear off you soon x

  2. I can’t believe how big he is getting. Nathan looks like he had lots of fun. I have something for Nathan but just need a address to send it to. Good luck in Montreal, you will have to let me know how it goes. Ryland sat up by himself for 22 sec at thearpy the other day and I just know with the right thearies he could do so much more.

  3. Aimee Seitz says

    Hi my name is Aimee and my Dauters name is Nauvoo. She has mild HPE like your son, but she also has Abcent corpus culosum, optoseptic displasa, and Demoser Syndrom. I have never talked to any one befor with a child like mine, and you look like you have things well at hand. I am strugling to try and find help for Nauvoo but all i am getting is a run aroung from SSI and the docters ive seen have no idea what HPE is. I would love to talk to you more and find out what you know and get some advice. I thankful so much that i fond you. We live in Az. and Nauvoo is 16 mounth old. I also have a 2 1/2 year old son named Max. Nauvoo is are miralcal baby as well, she can walk and play but she is having some trouble talking and doing thing by her self like eatting with silverware. I fill like there is nothing more i can do for her and i have a filling that things are going to get harder as she gets bigger i know there is help out there i just don’t know how to get it . I need your help please. My e-mail is thanks Aimee and Nauvoo.

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