A couple months ago, I shared the journey our niece and her son are on (and his dad – they divorced quite a few years ago, and I don’t want to come across as disregarding his part and his pain in this journey, but I notice I mainly refer to my neice). You can read that post Here or you can read his story here.
In reading online one day, I came across a foundation. Noah’s Hand’s of Hope. How beautiful some people are!!
They, too, are traveling this road that Leigh’s Syndrome is taking them down. In the process they have set up this foundation. In addition to accepting volunteers and donations, one can submit a child’s name. They support the family in many ways. From the child that is fighting the disease, to their siblings and to the family as a whole. Prayers, cards, calls, gift certificates. This foundation really touches suffering families in every corner of their lives.
I submitted Curt’s name and received a quick email from Kate. What a sweet person she is! One item was missing from the form though: a blog or a caring page or some way for the committee to verify Curt does exist and that his condition is real and this journey is true. A way to protect the foundation from being lied to.
It is sad that there are people out there, that will spend so much of other peoples energy scamming groups that are doing a wonderful act of reaching out to others.
The blog is up and posts are being made. Writing a post as if from a 6 year old is not all that easy. Our niece is busy with caring for him and two jobs and dealing with all the emotions that come with this journey, so extra time for her, well, needs to be spent loving on her Super C!
And while it has been a little odd and hard to post another's journey, there has been an award, other than having a way to share Curt’s story with distant friends, but in a way I would not have considered.
His mom told me she looks daily to see what is new with her and Curt.
Now I don’t share anything she has not approved or provided, but it seems that seeing the pictures and reading your story with someone else’s words can work. Can maybe give you another perspective? Maybe...
Another friend of the family said she had read it and oohed on how much more positive it was than the bits of a story here and a bit there.
It is so easy to hear the hurdles and miss those simple blessings that get lost in the less positive aspects of any day.
So while I struggled with the “should I have started it this way” I was encouraged to keep the pace.
You can visit Curt’s Corner here to read his story and maybe follow along with them. And if you will, include them in your prayers?
Also, there are few links on the side bar. One is Noah’s Hand’s of Hope, what a wonderful example of reaching out to others during one’s own time of crisis.
Another is the Tiny Sparrow Foundation. I stumbled upon it one day and was amazed by the photos. This not-for profit recruits volunteers that set up photo sessions with families whose children are terminally ill. Amazing pictures that will tug at your heart.
He tends his flock like a shepherd:
He gathers the lambs in his arms
and carries them close to his heart;
He gently leads those who have young