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Can you imagine what it feels like to be told your healthy, happy little boy is going to die in six months to a year?
Angwin Family Copes With a Child's Incurable Disease
That’s what happened to me.
My son is a patient at Napa Valley Hospice… and he’s only 12 years old.
Ethan was very outgoing, always a prankster—entertaining us all with his jokes and antics until around his 9th birthday, when he became very withdrawn and clumsy. He began acting out at school too. I just thought he was responding to changes happening in our family—his dad and I were separated, in new relationships, and I was no longer a stay-at-home mom.
For several months, I’d received calls from the school regarding Ethan’s behavior. Then one day, they called and said I needed to come get Ethan right away. He could not walk or see. Our pediatrician sent us to UC Davis for testing, and an MRI revealed that three-fourths of Ethan’s brain had been damaged by a rare and terminal disease called Adrenoleukodystrophy (ALD).
My son was going to die. I felt so guilty. How did I miss the signs that my son was so sick? These feelings only grew when I learned I was the carrier of the gene that made him ill.
But, once we understood and accepted the finality of the situation, I decided I was not going to let my little boy miss out on life. We spent a year visiting all the places Ethan loves.
Ethan can no longer walk, talk, or hold his head up. His hearing and vision have diminished, but he is still Ethan, the little boy who makes me laugh and brings so much joy to my life. He has simply become more creative in making himself understood—like blowing bubbles for a balloon, humming when he’s ready to leave, or straightening his body to show he understands what I’m saying. And, he still loves pranks!
I know there will come a day when we must say goodbye, but for now, we are still making cherished memories.
Robyn wants to go wherever Ethan wants to go now, while he can still enjoy it.
I hope you understand how grateful we are to you…because none of this would be possible without your generosity!
On behalf of our entire family, I wish you and your loved ones a very special year—filled with memories to last a lifetime.
Sincerely,
Robyn Jeffcoat Grateful Mother of Ethan
Angwin Family Copes With a Child's Incurable Disease
That’s what happened to me.
My son is a patient at Napa Valley Hospice… and he’s only 12 years old.
Ethan was very outgoing, always a prankster—entertaining us all with his jokes and antics until around his 9th birthday, when he became very withdrawn and clumsy. He began acting out at school too. I just thought he was responding to changes happening in our family—his dad and I were separated, in new relationships, and I was no longer a stay-at-home mom.
For several months, I’d received calls from the school regarding Ethan’s behavior. Then one day, they called and said I needed to come get Ethan right away. He could not walk or see. Our pediatrician sent us to UC Davis for testing, and an MRI revealed that three-fourths of Ethan’s brain had been damaged by a rare and terminal disease called Adrenoleukodystrophy (ALD).
My son was going to die. I felt so guilty. How did I miss the signs that my son was so sick? These feelings only grew when I learned I was the carrier of the gene that made him ill.
But, once we understood and accepted the finality of the situation, I decided I was not going to let my little boy miss out on life. We spent a year visiting all the places Ethan loves.
Ethan can no longer walk, talk, or hold his head up. His hearing and vision have diminished, but he is still Ethan, the little boy who makes me laugh and brings so much joy to my life. He has simply become more creative in making himself understood—like blowing bubbles for a balloon, humming when he’s ready to leave, or straightening his body to show he understands what I’m saying. And, he still loves pranks!
I know there will come a day when we must say goodbye, but for now, we are still making cherished memories.
Robyn wants to go wherever Ethan wants to go now, while he can still enjoy it.
I hope you understand how grateful we are to you…because none of this would be possible without your generosity!
On behalf of our entire family, I wish you and your loved ones a very special year—filled with memories to last a lifetime.
Sincerely,
Robyn Jeffcoat Grateful Mother of Ethan
Organizer and beneficiary
Robyn Jeffcoat
Beneficiary