Please Pray for Nathan – he still needs your help!

As we have learned more about Nathan’s condition, we have realized how much he still needs everyone’s prayers and support. His every breath is already a miracle, but to have a normal, healthy life, he needs more prayers.

Already he has beat the odds, but he has so many more to beat.

Nathan’s condition is called: Semi-lobar Holoprosencephaly

Here are some stats that we found from emedicine:

Mortality/Morbidity: In general, holoprosencephaly results in substantial early morbidity and mortality with a significantly reduced survival. However, individual reports describe long-term survival in all forms of holoprosencephaly.

Patients with alobar holoprosencephaly have a survival rate of about 50% by 4-5 months of age and about 20% at 12 months of age. Isolated semilobar and lobar holoprosencephaly have empiric survival rates of about 50% to 12 months of age.

Recent data from the Carter Center for Brain Research in holoprosencephaly indicate that complication rates in surviving individuals are as follows:

Semilobar holoprosencephaly – Spasticity in 85%, pituitary/hypothalamic dysfunction (diabetes insipidus, hypogonadism, hypothyroidism) in 74%, hypotonia in 70%, seizures in 50%, choreoathetosis in 20%, ambulation in 10%, use of hands in 10%, and use of words in 10%.

So for Nathan to be able to walk, talk, and use his hands, he has only a 10% chance.

Please keep baby Dorje in your prayers. Right now his brain is still developing, so please pray that it will develop sufficiently for him to be able to have a normal life.

Already you have all been so kind, we have received so much support, so many emails from people praying and sending this fortunate baby so much love. I know this is the only reason he is alive now. So please keep him in your heart, please continue to pray for him, please help him through your good heart.

We will continue to post pictures and updates as baby Dorje grows.

For now, he is doing wonderfully, he is a delight to care for. He is a very peaceful baby, very curious and in tune with people around him. Every day with him is a miracle and a joy.

We can’t express how deep our gratitude is for your continued love, prayers and support.

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