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Earning Wings and Flying Away

August 20, 2009 in Lana's Journal, Tay Sachs with 5 Comments

I am sharing this message from Athos and Helen, parents of sweet Stephen who passed away a couple of weeks ago. Dave, Carmen and I had the privilege of attending Stephen’s funeral.

It saddens us all to know that our son Stephen Andres Brewer entered into heaven in the early morning of Sunday, August 2, 2009. Stephen, as all of our children affected by GM-1 and other Lysosomal Storage diseases do, fought a bold and brave battle against incomprehensible odds for three years.

Stephen was a little boy with the courage and strength beyond measure.  He confronted the unrelenting symptoms of this disease and never let it affect his beautiful spirit.  Stephen was surrounded by his family as he left this earth.  Simultaneously as his spirit lifted to heaven, it began to pour rain as though the angels and God cried tears of joy to have him back home. We will miss him dearly.

Athos and Helen Brewer

Stephen, February 2008. Isn’t he adorable?!

Stephen

Baby Ryan

August 16, 2009 in Lana's Journal, Tay Sachs with 8 Comments

This morning, beautiful Baby Ryan went to be with Jesus. Ryan was three years old and had Tay Sachs. He was also adopted from Guatemala. Please pray for comfort and strength for Nancy, Ryan’s mom, and his three older sisters.

I was really hoping that Ryan and Carmen could meet as they share a birth country and adoption story. They will someday soon meet in Heaven.

And since you are probably wondering, no, Carmen and Ryan are not related. They are from different parts of Guatemala. The year we brought Carmen home from Guatemala, two other children were adopted into the U.S. from Guatemala who were later diagnosed with Tay Sachs. I want to add that this is not a good reason to be afraid of international adoption as these diseases are so, so rare. And no one could have known at such an early age that these children had Tay Sachs.

Beautiful Baby Ryan

Baby Ryan

They DO look alike! (Carmen photo by Rashmi Pappu)

Carmen by RashmiBaby Ryan, bw

Cooper Earned His Wings

July 9, 2009 in Lana's Journal, Tay Sachs with 1 Comment

We met an adorable little boy named Cooper at this years Tay Sachs conference in Boston. Cooper had GM1 Gangliosidosis (a disease similar to Tay Sachs) and just turned two in May. Yesterday on his Caringbridge site, Cooper’s mom wrote, “Cooper peacefully earned his wings this afternoon as the three of us sat on the swing outside. We were talking and rocking, and he just decided it was time. We are so thankful that he chose the time and place. It couldn’t have happened that way if we’d planned it… just as it should be.”

If you would like to leave a note of encouragement for Cooper’s family on his Caringbridge site, click here. Please keep this family in your prayers.

I love this recent picture of Cooper. One thing is for sure, Cooper’s family gave him a wonderful life.

Cooper at the beach

It’s Been Two Years

July 5, 2009 in Dave's Musings, Tay Sachs with 9 Comments

When I play games with Lauren while Carmen sleeps on the LovSac nearby, I stop and think, this isn’t the way it is supposed to be.

When I take Lauren to get a bagel at Panera on a Saturday morning, I stop and think, this isn’t the way it is supposed to be.

When I take Lauren to the park and I am her only friend, I stop and think, this definitely isn’t the way it is supposed to be.

When Lauren runs around with her cousins, I stop and think, this is sort of the way it is supposed to be…but there is supposed to be another little girl running around with them.

When I lay next to Carmen and cover up her ears because there is too much noise around her and it’s making her jump out of her skin, I stop and think, this isn’t the way it is supposed to be.

When we watch a brilliant fireworks display and make lots of family memories together…but Carmen is at home with the nurse, I stop and think, this isn’t the way it is supposed to be.

When July 5th rolls around each year, I vividly remember the day when Dr. Tifft told us that Carmen has Tay Sachs and think to myself, this really isn’t the way it is supposed to be.

***

Carmen has brought us great joy and many tears. Most days I am extremely thankful for the joy she provides.  But somedays I just think, this isn’t the way it is supposed to be.

Paper Lanterns

May 18, 2009 in Lana's Journal, Tay Sachs with 1 Comment

Carmen update: I spoke with Carmen’s gastroenterologist today and all of Carmen’s blood work came back fine. No problems at all. The doctors think that Carmen is leaking fluid from her vessels to her body tissues. The conclusion is that this leakage is causing the chronic diarrhea and swelling. (I think I got that right!) We did add fiber to her formula but the diarrhea continues. The nutritionist is going to call tomorrow with a plan to decrease Carmen’s calories and fluid intake.

The gastroenterologist said that the leakage is not something typically seen in Tay Sachs patients. She added that Carmen does not have classic Tay Sachs so who knows if this is something seen in Tay Sachs AB Variant patients. There is no one to compare her to.

The positive is that Carmen does not appear to have C-diff. So, no one is going to catch it from her! The negative is that she will most likely have diarrhea for the rest of her life! If we ever have another newborn, I will never, ever complain about all the diaper changes.

Monica the Magnificent and Lauren made these paper lanterns a few weeks ago. Monica is the craftiest person I know and she has a very willing apprentice! Every Wednesday afternoon they work on a craft project. Thank you Monica!

Paper Lanterns

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