Adiós Didier!

With a wave and they’re 4-4It seems like only yesterday when we were at the airport to receive Didier and Luz on their arrival at Heathrow.  And this time we’re back at the airport to see them off.

photo 2-10It has been a busy week for them, quite a whirlwind tour.  There were a few places I was not allowed to go to but on most days I saw Didier – and with each day, he got more comfortable with me.IMG_9060 unnamedIt’s taken more than a year and a half, with a lot of help and support from friends to make this happen. And it seems in a blink of an eye they’re going home.

The most important outcome from this trip – Didier is now a part of the very advance CMN research at Great Ormond Street where Dr. Kinsler is leading the team in finding a cure that can possibly reverse the genetic mutation.

The other thing is Luz and Didier has made a lot of friends in London – they now know they are not alone in their journey. photo 1-11 photo 2-11But as he goes home to Bogota and goes on with his life, he will need constant monitoring to make sure that his nevuses stay benign. Caring Matters Now, the support group had set up a fund raising page for Didier.  We would love it if you can help contribute to his ongoing well-being. Just Giving for Didier Montalvo

Adiós, Didier and Luz! I know Mummy will see you again and I hope I will too.

May’s comment: I can’t believe we’re saying “goodbye” …

Looking back at the last two plus years, it’s been an amazing opportunity that the Universe offered me to believe in dreams coming true, to know that if I worked at something it will happen.

It is also with some relief that the self-inflicted goal to be Didier’s “window to the world” has been achieved for the immediate future. So besides him literally seeing the world,  he is now part of a very advanced research that we hope will find a cure for CMN – that’s his window of opportunity to be healed some day in the future. His world has also been widened by meeting others who like him have CMN.  Now Didier and his mother know that they are not alone. That when in doubt, they have others to go to for advice and help.

For me, it has been a journey of the soul and the heart which could not have happened without the support and help of friends and people I got to know at NGOs in Miami and Bogota. Altogether we worked towards what was seemingly a “nice” dream. And though it started with a bang, it rolled along ever so slowly that at times I wondered if I was being too ambitious.  Sometimes it is so much easier to say I’ll fund it all myself and need no other but language barriers and  bureaucracy were the biggest hurdles.IMG_8807It’s been an amazing learning experience.  It wasn’t just in believing that dreams can come true, that goals can be achieved in miraculous ways, that the support of friends have been essential, but in also learning that when you do something out of love, that’s the most essential ingredient. You can’t go wrong with it. It has been Mission Accomplished

And today, I also do not feel alone in trying to help this little boy to have a normal life.  Through the process I have also met incredibly giving people from all walks of life who give out of their hearts.  I now know I have comrades in this personal project to make sure Didier and Luz are not alone. There are a few more of us who will help with letting them know that we care about him. Hooray!

And he also likes at least one doggy – Miss Darcy! She won him over! As we said goodbye at the airport and posed for the last group photo, Didier reached out to hold Darcy’s paw. 🙂Touch


  1. Margaret Danks

    What a lovely touching story MissDarcy and May. You are good, kind souls. X

  2. Diana Muhl

    What a pleasant surprise to stumble onto this great follow up on Didier. It is wonderful to see that so many are watching over him and working on a cure for CMN so that Didier and his new friends can look forward to a bright future! I don’t know how May (& Miss Darcy) got involved but thank you for going to bat for Didier and his precious family! It sounds like it was a long journey but job well done!!

    • Miss Darcy

      HI Diana,
      I watched the documentary on TV and felt very emotional about it. I kept thinking about him and wondered what happens after the TV crew have gone home, etc.
      I picked up the phone and called the English surgeon, who directed me to the Producer.
      I wanted to give a donation and then I thought – I’ll call my Colombian friends, of which I had two and amazingly, one of them knows the Colombian surgeon who operated on Didier.
      I took a flight to meet him and to meet Luz and Didier – and it became my goal for him to be a part of the CMN research at Great Ormond Street hospital.
      Due to language problems we haven’t been able to stay in touch a lot but I now know he is part of the research pool.
      You have just reminded me to get in touch with the lead researcher.
      It was a journey – I was in the right place at the right time. I had to do something.
      How did you hear about Didier?

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