Help for Naes’ MRI scan and Therapy

Please watch video from start to end to get to know Naes better.

This is my daughter, Naes.

Naes was diagnosed with a condition called Cornelia de Lange syndrome. It is something that only happens to 1 out of 10,000 to 30,000 children in the world. This syndrome is even rarer in the Philippines that I really didn't have an idea what my child has and how to help her cope in this world.

She is small in stature, cannot walk on her own, and she cannot speak yet, at the age of five. She also has cleft palate which the doctors said could be causing her mild deafness and inability to form proper words yet. Because of her cleft palate, she is also unable to eat solid food yet. She only eats porridge and we order ground monggo beans and rice for her.

A good friend, Glen, who saw Naes and saw how lively and energetic she is, despite her condition, helped us start treatment for her. She's already three years old by then when we started the treatment.

At first, I was both hesitant and scared to go to the doctor and find out what my daughter has. I think I was in denial and, to be honest, I was selfish because I was afraid to be told or "confirmed" by the doctor that what happened to her was my fault. If it wasn't for Glen and for my mom's convincing, I wouldn't have known what Naes had. Yes, I was selfish that way, and I admit it. And I really was sorry that I didn't start it earlier.

But part of the reason why I couldn't get Naes to the doctor was that I wasn't financially able. As a single mom, I had to raise Naes by myself, making ends meet. At the time, I am also helping my siblings finish their college education. So it was really tough. I was only able to earn enough money for food and house expenses and my siblings' allowances. I couldn't set aside money for medical expenses for Naes. But because of some good people who saw Naes and wanted to help her, we were able to go to the doctor, get a diagnosis and start therapy.

And now that Naes is 5 years old, she has gained enough weight for a cleft palate surgery. We tried to get her operated a couple of times through medical missions, but they cannot do it because it's too risky for her, given her weight and condition. She was required to be at least 10 kilos for them to operate on her, and she will have to stay in the ICU after the operation to monitor her condition.

As we move forward to her operation and treatment, we would like to ask for your help. She needs to undergo an MRI scan before she can proceed with the operation. But the cost of MRI scan here is more than the amount of my salary. I took part-time jobs too so that I can support her needs further, but it wouldn't still be enough.

I am sincerely asking for your help to raise the funds that we need for the MRI scan as well as the post-operation expenses. I really, really hope that you can help me on this.

All the best,

Shane