It is now into the 4th month since you have left me my precious! Its been so tough but I will continue to strife to be happy. I have many memories of us together to keep me going to the day I get to see you again my love.

I am starting this blog so that I can jolt down all the wonderful times we have had together and also for others to come to know about you and the terrific battle you fought while you were here with us. I want them to be inspired by your life!

Lets start at the beginning then. Even before we found out that you had Menkes.

The day you were gifted to us. 29th June 2008, 9.14am at K.K Hospital!

Such a tiny little bundle of life! So miraculous! I named you Mathias Ong Lian Zheng! (Gift of God) That's what your name Mathias meant! To me, you were literally a gift from God! We didn't plan you at all. You decided that you wanted to be our child.

I enjoyed carrying you to term. Feeling you kicking and moving inside of me was the best experience ever. I will never forget that.

It was even more amazing when you were born and crying in the birthing room. You were all wrinkled and covered with blood and mucus but you were the perfect little baby boy of mine. All seemed fine and we were happy to settle into parenthood.

No warning signs until later that night when you were taken to the special ward downstairs for monitoring and oxygen. And even then, no one came to inform me about that as well until the next morning when I wanted to see you and then the nurses of the ward realised that you were not in the nursing ward but downstairs in the special ward.

You were sent for tests and more tests as no one was able to tell what was wrong and all seemed normal. You stayed another 5 more days before I was able to bring you home with us. You came home with lots of appointments scheduled at the Hospital with various doctors.

We were positive that they were wrong in their fears. We kept the appointments but we believed that you were fine. You grew well, but as the months wore on, we realised that you were not hitting the milestones. Being first time parents, we were optimistic that you were just slow. Why would we suspect that you were not well.

After seeing many doctors there, we finally met Dr Angeline Lai, Genetics dept. She was the first one who gave us any sense of hope that something will be done. We sent you for MRI scan which was postponed so many months cause you were sick n had tons of phlegm. Finally you went for the scan and we found out that you had suffered a mini stroke. Which may be why you stopped smiling and talking to us. By then, you were already 8mths old, but the scan showed that your brain development was about 3 to 4mths.

And the most amazing thing was, we met this visiting UK doctor doing the rounds with the KK doctors and when she saw you, she suspected that you had Menkes. Just from the texture of your hair! They did a blood test which showed that the level of copper in your blood was low. High chance that you had Menkes. We then sent your blood and my blood to the States to get it tested and finally we had a name to what's causing you all the delayed growth.

With all these confirmed, I finally had to face the most horrific truth. My child is suffering from Menkes Disease. I would have to deal with the fact that my child may not live to his fullest. That I may have very little time with him. How does one deal with that and accept it?

It was the lowest period in my life up to that point. I cried and cried for the what could have been. I was depressed and couldn't cheer up. All the lost future staring at my face. I would never see my child crawl, lift up his head, call me mama, walk, talk, go to school, run, grow up, get married, grow old. How does one deal with all that?

But my husband reminded me aptly at the point that, no matter what, he is still a gift from God!!!! And we will accept it and be happy with it still. I swear, sometimes my husband is wiser than me. How did I overlook that fact. From that point onwards, we both decided that we will make the best out of what we have. We will treasure it and create many wonderful and happy memories from it. No matter how much time we will be given with our child, we will make it count. We will give him the best of everything and make it the happiest time he will have here on earth with us. We will have that when he is no longer here with us to remember him with.

Hence, that is how we have lived our life from that moment on!

No path is too difficult if we stand by each other!

For those who need further clarification on what is Menkes:

Menkes syndrome

Steely hair disease; Menkes kinky hair syndrome; Kinky hair disease

Last reviewed: May 15, 2011.

Menkes syndrome is an inborn error of metabolism in which cells in the body cannot absorb enough copper.

Causes, incidence, and risk factors

Menkes syndrome is caused by a defect in the ATP7A gene. The defect makes it hard for the body to distribute and absorb copper. As a result, the brain and other parts of the body do not get enough copper.

Low copper levels can affect the structure of bone, skin, hair, and blood vessels and interfere with nerve function. Copper also builds up in the small intestine and kidneys.

Menkes syndrome is inherited, which means it runs in families.

Symptoms

Bone spurs
Brittle, kinky hair
Feeding difficulties
Irritability
Lack of muscle tone, floppiness (hypotonia)
Low body temperature
Mental deterioration
Pudgy, rosy cheeks
Seizures
Skeletal changes

Signs and tests

There is often a history of Menkes syndrome in a male relative.

Signs include:

Abnormal appearance of the hair under the microscope
Abnormally low body temperature
Bleeding in the brain
Slow growth in the womb

In males, all of the hairs will be abnormal. In females who carry this trait, only half of the hairs may be abnormal.

Tests include:

Serum ceruloplasmin
Serum copper level
Skin cell (fibroblast) culture
X-ray of the skeleton or x-ray of the skull

Genetic testing may show a change (mutation) in the ATP7A gene.

Treatment

Treatment usually only helps when started very early in the course of the disease. Injections of copper into a vein or under the skin have been used with mixed results.

Expectations (prognosis)

Most persons with this condition die within the first few years of life.

Complications

Seizures
Death

Calling your health care provider

Talk to your health care provider if you have a family history of Menkes syndrome and you plan to have children. A baby with this condition will often show symptoms early in infancy.

Prevention

See a genetic counselor if you want to have children and you have a family history of Menkes syndrome. Maternal relatives of a boy with this syndrome should be seen by a geneticist to find out if they are carriers.

Review Date: 5/15/2011.

Reviewed by: Chad Haldeman-Englert, MD, Wake Forest School of Medicine, Department of Pediatrics, Section on Medical Genetics, Winston-Salem, NC. Review provided by VeriMed Healthcare Network. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.