Nathan's Hope

To say that Nathan Dorje Andrew is a “Miracle Baby” is an understatement. Nathan has Holoprosencephaly, a brain disorder that causes skull and facial defects, as well as severe developmental delays. In most cases the babies die before birth.

Here are the statistics for Holoprosencephaly:

His condition is about 1 : 20,000 out of every birth. (0.00005)
1 : 200 make it through full term pregnancy alive. (0.005)
less than 2% of those survive through the trauma of birth to their first breath. (0.02)
less than 1% of those that survive come out without health complication which will allow them to live during their short hospital stay. (0.01)
Total odds = (0.0000000005) or 1 : 20,000,000,000 chance. That is 1 in 20 Million.

In the California Super Lotto Odds = 1:18,009,460 (1 in 18+ Million).

Nathan Dorje Andrew
(aka. Mr. Smiles)
Born: August 7, 2006
Weight: 7lb. 9oz.
Height: 19 inches

Now, Nathan is 2 years old and has beaten all the odds.

Unfortunately there is no course of treatment for this disorder. Nathan has had to go through countless tests and treatments. Due to the nature of his disorder, he needs specialized treatments designed to treat the brain. These treatments are not covered by insurance therefore they have refused to pay for most of his therapies.

Because of kind-hearted people, we have been able to put him through some treatments that have helped him, but he is a long way off from walking and even further from being normal.

We refuse to believe that Nathan doesn’t have potential and we refuse to give up and just accept that he will be in a chair non-mobile non-verbal. Now of course we know and understand that it is a possible outcome and we accept that. However, we figure that if that’s his prognosis then if we don’t do anything that’s what’ll happen and if we do something it may still happen but there’s a chance that he will develop new skills so we want to do our best to explore the possibility of helping him develop new skills. All we have to lose is money and we’re willing to accept that loss.

So we have looked at and researched many programs that have the potential to help Nathan develop motor skills. Please see the chart below to review our research:



You can click on the chart above to see a larger version of it.

I have read and done research on brain plasticity and believe that if we follow different therapy plans it’s possible that maybe Nathan’s motor cortex will remap and enable him to gain some motor skills. We’ve already seen this as his occipital cortex seems to be absent yet his vision is perfect. So we’re hoping to extend this to the motor cortex.

Here’s what we’re currently doing:

Physical Therapy: 5 times / week (3 times at home, twice at a clinic)
Occupational Therapy: 3 times / week (at home)
Speech Therapy: 1 time / week for language/ augmentative communication, 1 time / week vital stim (at clinics)
Developmental Therapy: 2 times/ week (at home)
Group Therapy: will soon start twice a week at a clinic
Hippotherapy: 1 time / week

We have also been to Oregon and have done a program called Reach, which is similar to the Institutes for the Achievement of Human Potential. Here’s a video of him doing a session of the program:

Reach Program Video

We were doing that 4 times a day but have winded down to doing it once or twice a day.

He’s had fetal stem cell infusions twice in Dominican Republic. They were given to him by Dr. Rader from Medra.

He’s been to an intensive therapy program at Napacenter.org. He went for 3 weeks, 4 hours a day. He got stronger, but lost the strength very quickly. We would like to go again in the near future.

Hyperbaric Oxygen Therapy. Nathan started “diving” last October.

ABR (Advanced Biomechanical Rehabilitation): We went to Montreal for this program last October: abrcanada.com

G-therapy: We have the first 3 months ready to go and will start him on this program on the week of Oct 13th.

We are now looking at the following things: Future Treatments:

Biomedical Protocol: We are testing him for food allergies and will create a nutritional program specific to his needs. We’ll ge giving him vitamins and supplements to support his immune system and body. We sent the bloodwork, stool and urine samples and will wait for the results to start his diet protocol.

Neuro-fitness: a developmental program that is design to help him to overcome infant reflexes and stimulate new neural connections for movement. Neuro Fitness

After we get back we want to think about/look at some of the other programs listed on the therapy chart.

Our hope is to get Nathan strong enough to hold up his head and possibly his trunk, as well as to develop the ability to say some words.

Finally, we are finalizing the process of getting him a gait trainer so he can gain independent mobility. We’re getting him the Hart Walker and the Kidwalk.

Medically, Nathan’s only problem is Reflux for which he takes prevacid, and hydrocephalus for which he has a VP shunt. He feeds orally (mashed/pureed foods).

Nathan’s hope is that he will one day be able to hold up his head, control his muscles, sit unassisted, crawl, walk, and say words.

Nathan’s life is a miracle - his chances for survival and living past 1 year old were 1 in 20 million.

Nathan not only lives - he is full of life and joy. He is a happy child who loves elmo, his family, swimming in the pool, and reading books.

Nathan needs intensive intervention to achieve goals like head control, rolling, sitting, standing, and crawling.

If you would like to donate to help Nathan click HERE to find out how.

By Brian Andrew of Pray for Nathan