Walker-Warburg

Max's Book

In talking with some friends this past weekend, I realized I had been reluctant to update all of you on Max’s final “clinical diagnosis” from our last meeting with the genetic counselor … I am sure my reluctance is due in part to the gravity and future-impacting nature of the results. I have attached Dr. Wheeler’s full report as a PDF, though I will say that as complete as it is, it no where describes the person I know as my son.

Some of the main points that are within the report …

• Max was diagnosed with Walker-Warburg syndrome.
• It is autosomal recessive, meaning that an unaffected parent “carrier” can pass it along to their children.
• It would seem that Jodie and I are BOTH carriers … meaning that there is 25% (1 in 4) chance that this could affect future children.
• A 14-16 weeks ultrasound would be earliest when we would be able to tell if a future child was affected.

To be brief, we still don’t yet know what this means for us as a family. Obviously the doctor recommended the usual options (artificial insemination, in vitro fertilization, adoption, etc.) … but we haven’t made any decisions yet.

Maximillian Medical Report (PDF)

“Moses answered the people, ‘Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today. The Egyptians you see today you will never see again.’” – Exodus 14:13

“And Mary said: ‘My soul exalts the Lord, and my spirit has rejoiced in God my Savior.’” – Luke 1:46-47

“No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” – Romans 8:37-39