SASHA BELLA STEIN - BLUMBERG
|Donate online to The Sasha Bella Fund or call Laurel Shillingford, SickKids Foundation, at 416 813 7588|
Sasha Bella Fund for Family-Centred Care
2009 fun day
Sasha Bella Fund Nurse Award
Sasha's first 18 months
Living at Sick Kids
Goodbye to Sickkids
Heather Rivlin's palliative photos
Precious 5 weeks at home
Alagille Syndrome Resources
The Sasha Bella Fund
|"Sasha Bella, 2: Palliative care fighter: Babies can also be palliative patients, Fund aims to aid parents and staff" Catherine Dunphy, Toronto Star, August 28, 2006|
Weathering the unimaginable Diane Flacks, Toronto Star, April 26, 2008
Fun-Day event pictures of the families, Dr Jonathan Hellmann, Bloorview therapeutic clowns, Sho Mo + The Monkey Bunch, Charlie and Little Fingers Music, Deborah Maes, Rhythmic by Nature, Young Choung Taekwando and food from RaviSoups, Stockyards and Mildred's Temple Kitchen. 2009 Sasha Bella Fund fun-day fundraiser schedule and sponsors.
|We built these pages in May and June 2006 as we came home from SickKids. We have left the text below as we recorded it in June 2006. Thanks for visiting.|
Sasha Bella was born June 6, 2004 at Mount Sinai and transferred within hours to Sick Kids. This website celebrates her precious and brave life. Sasha has Alagille Syndrome with
Pulmonary Atresia, VSD and MAPCAs. She also has Portal Hyper Tension causing GI varice bleeding and after her surgery she
developed an enterocutaneous fistula. We spent a lot of time on the Alagille Syndrome Alliance bulletin board, a wonderful resource for parents to help each other world wide.
"I want to turn the whole thing upside down - I'll find the things they say just can't be found - I'll share this love I find with everyone - We'll sing and dance to Mother Nature's songs - This world keeps spinning and theres no time to waste - ... Who's to say what's impossible and cant be found - I don't want this feeling to go away..." Jack Johnson, Curious George soundtrack
About 45 minutes after Sasha was put in Pamela's arms she had difficulty breathing. She was given oxygen and sent to Sick Kids NICU. Tests confirmed that she did not have a pulmonary artery. Over the next weeks, more tests confirmed Sasha has Alagille Syndrome. Sick Kids viewed her condition as severe but took her on as a surgical candidate. An exploratory catheterization was followed by surgery to insert a central shunt. Additional catheterizations in April and July attempted to dilate the collateral arteries. On December 14, 2005 Sasha had the second planned cardiac surgery. As before she bled internally however this time she suffered significant blood loss to her lower organs. Her liver took a big hit. She developed a GI bleed and was diagnosed with Portal Hypertension. After several scopes, during which an ulcer was cauterized, surgeons opened her tummy but were unable to go further due to blood loss.
Dr Jennifer Russell, her Cardiologist, helped us bring her from CCU to Cardiology to rest and build her strength. She regained her personality and laugh as she bounced back. The bleeds stopped. A few days out of CCU she started seeping tummy fluid from her surgical scar. This was caught in an ostomy bag that we empty and replace as we waited for the fistula to dry up. After 8 weeks the fluid was down from 350 ccs a day to less than 50 ccs a day. Then the bleeds reoccurred. Sasha no longer has a surgical plan and we are working with Sick Kid's Paliative Care team to bring her home. After almost four months without oral food or water, Sasha is eating again for pleasure, while still getting her nutrients from TPN, lipids and glucose fed via IV line. Her favourite food is now crushed ice, challah and cookies. Our special gift has come a long way and we will enjoy every second with her. Our hope is to bring her home the week of May 15.
We have been home 4 weeks on June 17, 2006 and Sasha had been bleeding again for two days.
We hope that it stops soon otherwise we will have to say goodbye to our beautiful little peach.
We knew the day would come and the onset of bleeding is expected but still, we liked to think we could just go on
together for longer. Putting up pictures allows us to savour what we have together but progress is slow,
for updates go to Sasha's blog.
Our sweet peach left this world 6.20pm June 20, 2006 and Pammy gave birth to Mia 6lb 6 oz at 5.50am June 21 at Mount Sinai. Sasha's funeral was a beautiful grave side service at Pardes Shalom, Temple Emanu-El section, overflowing with people and love, at 12 pm Sunday June 25, 2006. Shiva visits were held from 2-4pm and shiva services were at 8pm at Sasha's home until Thursday June 29th.
OT Stand, Daddy dressed, Sausage, Sasha's world, Put them back in, Its your dog, Scale camera, Banana
Lady Sasha, arrival May 17 2006, Smack Nose May 17, Heather Rivlin photographs us first morning May 18
|A family affair May 19, Waking to Riley, pinch me I'm dreaming May 20, Delicious moments May 20, Pillow talk May 20 Sasha with cousins Sarah and Betsy May 21, Nurse Pamela May 22, Feet and toes May 23|
|Stein / Blumberg - Pamela and Jonathan are thrilled to announce the birth of their daughter Sasha Bella born on Sunday, June 6, 2004 at 4.45 p.m. weighting 6lbs . 1 oz. Sasha is welcomed by elated grandparents Lorna Stein, Henry and Marcia Blumberg, great-grandmothers Ruth Stein and Bertha Klar and numerous aunts, uncles and cousins. Sasha is named in loving memory of Jonathan's great-great-grandmothers Sarah Altshuler and Sarah Sacks and Pamela's father Bruce Stein. We welcome our beautiful protector with love and laughter together in a new wonderful life.|