Today, it's 200 Filipino NF Friends!

I’m not sure if it’s okay to be happy about this, but I AM SO GLAD!

Ever since I met my first, NF Friend (Ate Cel), I’ve started listing down the names of my NF Friends. Wala lang. Gusto ko lang.

I started writing it on Notepad (the app).

And then the names on the list reached 15++, so I transferred it to MS Excel while we were hoping that we’ll be plenty enough to be able to form a support group.

And then NFF Support Group was born!

I keep revising and editing the list as our members grew in number. When it reached 50, I wished that if only I can group the members according to theeir location so that they’ll know who lives near who. But I think it won’t be fair for some if nobody else is located near them. 

Fast forward to today, we already have: 65 NF Friends from Metro Manila, 12 NF Friends in Rizal, 14 NF friend in Laguna, 13 NF Friends in Cavite, 8 NF Friends in Bulacan, 10 NF Friends in Southern Luzon, 23 NF Friends in Northern Luzon, 27 NF Friends in Visayas, 17 NF Friends in Mindanao, and 10 Filipinos with NF from outside the country.

Once again, I have mixed feelings about this. Happy that we already have a lot of members and it’s now a 3-digit number. Sad that there are a lot of us who have NF. And then VERY HAPPY that we found each other! We are really not alone.

  

The other night, while I was arranging & organizing the list, I suddenly felt so amazed, happy, & grateful all at the same time and so I posted this:

It goes something like this:

When there are members who were able to find NFF (support group) because a random person approached them and asked: “Do you have NF?” and then told them about NEUROFIBROMATOSIS FRIENDS (Philippines).

When there a students who send messages to the NFF page because of their case study, thesis or assignment that is about NF.

NF may still be not that known and a lot of people are still not aware about it but *tears of joy because even if it’s something small and only a few people knows about it, still there is something.

It’s just like the saying, “every cent counts.”

Big things are made of small things, right?

Trisha and her barley business

A couple of days ago, my NF Friends, Jizel and Trisha suddenly decided to go to our house.

And then a couple of hours later...

NF Amici (NF Friends)

Sunday is family day & I spent the 1st Sunday of August with some of my NFF family.

I’ve been meaning to invite these friends for a meal and thank God, I was able to make it happen. I often chat and talk with them; some I even talk to almost 24/7. They even accompany me and won’t leave me behind online whenever I’m all by myself at home (binabantayan daw ako) and I’m super touched. While they would often tell me me how I’ve helped and inspired them, they helped and inspire me as well. They often make me smile and laugh too.

Last Sunday I met up with my NF friends for a pizza & pasta lunch date at Amici in Megamall. Good food + Great Friends = Awesome!

  

   

 

After showing off my head (sira ulo hahaha) and how my left fingers and my left foot moves, I discovered a new improvement with my left foot. Those improvements may only seem trivial, but it really means a lot. Showing-off my the “my tricks” is my way of telling people that I really can’t but I CAN, so whatever you are going through, never give up. As long as you try, YOU CAN do it too. I’ll make a separate post about this…soon.

Amici means friends in Italian. We are NF Amici!

January 2016

January 1

Welcomed the New Year aith GYA Peeps, of course. Always have been.

And so IPON2016 begins!

   

KCAT CAN: Beautiful despite the imperfections

Beautiful despite the imperfections

“I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” − Psalm 139:14

When I was a child, I was diagnosed with various illnesses and conditions, which we later found out to be just one kind of disorder – Neurofibromatosis (NF).

NF is a neurological disorder and causes benign tumors to grow on nerves that can affect many parts of the body, including the brain, spinal cord, nerves, skin, and other body systems. It can be inherited and can be caused by a mutation in genes. Once you have it, you can pass it on to your children.

KCAT CAN: The sincerity of children

The sincerity of children

Look at children. Of course, they may quarrel, but they do not harbor ill feelings as much or as long as adults do. Most adults have the advantage of education over children, but what is the use of an education if they show a big smile while hiding negative feelings deep inside? Children don’t usually act in such a manner. If they feel angry with someone, they express it, and then it is finished. — Dalai Lama XIV

One day, my friends wondered. “How does one feel when one is doing something just for the sake of getting the job done, to gain praises or popularity, without a bit of sincerity?”

Meet-up with my NF Friends

Last August 2, my NFFs had a not-so-planned meet-up at Megamall. Syempre late ako!!!

Photo from Nilo

Thanks for the Bubble Tea & Chewy Junior treats Kuya Land!

Next meeting/topic: Christmas Party!