Be at Peace, Niamh Lilly Kay Evans

Niamh Lilly Kay EvansSweet, beautiful little Niamh lost her battle with Gaucher’s Disease type 2 last week.    She was only 10 months old.   She fought so hard, for every breath, every day of her life.

I met her a few months ago, soon after she was diagnosed.   I felt a real connection with her mom, as she had the same fight and “out-of-the-box” mentality that I do.  She was always looking to see what was out there to see if there was something that could help her Niamh.   She is an amazing mom.

When I asked her mom if she wanted to share something about Niamh,  “what always stood out about Niamh was how she would smile whenever she was shown affection. That she loved music and got really excited if we sang or danced with her. She loved having a massage and a cuddle. She liked to sleep holding on to either dave or my lip. She loved her brother and he would let her play with his hair. when she was struggleing he would stroke her hair. She had a cheeky grin whenever she was able to taste food…particularly chocolate.”

But now this horrible disease has taken another child away.  It is just so not fair.  This beautiful girl deserved a chance at life.


  1. Very sad. I am so sorry to hear about that. I pray for peace for their family. She was very beautiful.
    .-= Petula´s last blog ..Weekly Inspiration: Change of scenery =-.

  2. My heart is breaking for Niamh and her family. I am so sorry. :'(
    .-= Cristina´s last blog ..A Week Long Update =-.

  3. rebekah klitzke says:

    we feel you so close. ours hearts have been broken by this disease also..we lost two sons, one 10 months and one only 3 months. it is so awful and painful and you feel like you should just fall apart…and you do…but you don’t…how is it that i am still breathing i would think? it is amazing, it is awful, it is beautiful…we have i thik been granted a very wonderful, and difficult gift in these children…one day, i believe, it will be made clear, that they have blessed us beyond imagining….but today, my heart breaks for you.

  4. Wot can i say she was a beautiful girl and she had a lovely smile it is a shame that this illness took her away far to early my heart goes out to her parents, brother who i admire cause the last few months have not been easy for them all, i have my own memories of niamh which will not be forgotten x

  5. Heartbreaking. Utterly heartbreaking.

  6. I’m so sorry. She was a beautiful little girl.
    .-= Rachelle´s last blog ..CdLS Family Gathering… =-.