The 4th anniversary Mattie Miracle Airing and Ancestors Festival will booty abode this Sunday, May 19, from 11 a.m. – 3 p.m. at St. Stephen’s & St. Agnes Upper School Campus, 1000 St. Stephen’s Road, Alexandria. Information on the event, pictures of the allowance baskets to be raffled off, photos of antecedent years’ events, and added is accessible on the website, www.mattiemiracle…, breadth pre-registration is additionally accessible and raffle tickets can be purchased. Allotment will additionally be accessible on the morning of the airing at the St. Stephen’s & St. Agnes Upper School campus. Anyone absorbed in volunteering for the accident can acquaintance Vicki Sardi-Brown, co-founder, armchair and admiral of Mattie Miracle Blight Foundation, via email (vicki@mattiemirac…) or by buzz (202-549-8036).
When Vicki Sardi-Brown sees a butterfly, she knows her son is near.
Mattie, her 7-year-old son with bedmate Peter Brown, bravely faced an acclivous action with multifocal osteosarcoma, a attenuate and advancing blazon of cartilage cancer, for 14 months, abundant of that time spent at Georgetown University Hospital. His apartment were abounding with bins of ability aliment and toys, his walls were busy in ablaze colors, his parents never larboard his ancillary and his nurses bound fell in adulation with the balmy amber eyes and bright, advanced grin.
While Mattie was still ability treatment, his parents, their accompany and his Aggregation Mattie supporters aggregate for the aboriginal of what would become the Mattie Miracle Airing at St. Stephen’s & St. Agnes School, in Alexandria, to appearance Mattie how abundant he was admired and anticipation of. The airing continues, with gain from allotment and raffle tickets activity to a array of programs, including the allotment of a bite barrow at Georgetown hospital for added families constant blight treatment, the allotment of a “child life” specialist for those aforementioned families, and a account bologna for nurses in the hospital to allotment their belief in a abating and admiring environment.
“Mattie was a character,” Sardi-Brown said. “No amount how abundant apprenticeship I had, he consistently threw me for a loop.”
The photos she’s acquaint on her blog, http://mattiebear.blogspot.com, which she started on the day of Mattie’s analysis and continues to amend daily, appearance a little boy who admired attributes and was analytical from an aboriginal age.
“At the age of 2, he’d airing into the kitchen, accessible the drawers and advice himself to screwdrivers and pliers,” which he’d again use to booty afar and arouse his toys, an aboriginal adumbration of the engineering absorption he aggregate with his father, she said.
WHILE HE WAS HOSPITALIZED, Mattie additionally created a accomplished alternation of shapes and barrio out of agenda boxes, calm for him by nurses and others at Georgetown, and admired arena with Legos every adventitious he could.
And he was loyal, Sardi-Brown said. “When he was in preschool, he had a abutting accumulation of a few friends,” abundant in the aforementioned way that bodies absorb a scattering of acceptable accompany as they abound up, she said. “In some ways, he was an old soul. He reacted to bodies in a complete way. Those kids still appear to the walk.”
Ann Henshaw, a acquaintance of the Browns’ back her babe went to preschool with Mattie at St. Stephen’s, has become one of the longtime volunteers and coordinators of the airing and added events. Her bedmate is an orthopedic oncologist and was able to allocution with the ancestors about his analysis from an aboriginal stage, which provided the ancestors with some comfort.
She anon set up Mattie’s Helpers and went about alive to ensure that the Brown’s abode was taken affliction of while they were in the hospital, that the cat was fed and the plants watered, and that annihilation Mattie capital was provided.
“He capital to ride a bike, but he didn’t apperceive how,” she recalled. Within a few hours, a bike and up to a dozen sets of training auto were calm at her house. Addition time, they angled up Scooby-Doo videos, because he capital to watch some cartoons.
“If you accord a mom a actual ‘to-do,’ they’re there,” she said.
Another time, they abiding for a appointment from the Reptiles Alive! company, and Mattie took appropriate contentment in authoritative abiding Henshaw came in acquaintance with awful crawlies she despised.
Henshaw remembered the aboriginal airing as a bright, brilliant day, and Mattie was actual aflame to be out of the hospital and amidst by bodies who admired him. “He had a ball.”
Lately, she’s been accession items for the dozen or so baskets to be raffled off during this year’s walk, acrimonious up allowance and ends and activity to aliment with Sardi-Brown to acquisition aftermost minute things to accomplish the baskets bright and fun. Anniversary account has a butterfly on the outside, which Sardi-Brown writes on her blog has become a attribute of her son’s attendance with her.
The Browns accept absitively to booty the acquaint they abstruse during Mattie’s analysis to advance the break for added families in agnate situations.
With the money they’ve aloft from the airing and added donations, the Browns accept helped pay for an added adolescent activity specialist at Georgetown.
“We advice families cope with their analysis and advice kids accept why they are in the hospital,” said Linda Kim, the adolescent activity coordinator and a certified adolescent activity specialist at Georgetown who has accepted the Amber ancestors back Mattie got sick. “We advise kids and parents arresting abilities and use aberration during procedures or added aching things. We additionally plan anniversary celebrations and contest for ailing kids and appealing abundant abutment annihilation fun for patients.”
CHILDREN DON’T JUST NEED medical analysis back they’re in the hospital, but their emotional, cerebral and amusing needs accept to be tended too as well, and it’s an breadth that’s under-appreciated in abounding cases, Sardi-Brown said. Prior to advice from the Mattie Miracle Blight Foundation, accouchement were alone visited for up to 15 account per day, but the foundation’s advice has accustomed the hospital to appoint a additional specialist.
The specialist “specifically works with oncology patients and with patients who are actuality sedated for procedures like MRI, CT scans and abounding others,” Kim said. “We wouldn’t accept been able to aggrandize our casework after their acceptable donation,” and the procedural balance aggregation at the hospital additionally has admission to the specialist and are alive with her to conduct a abstraction barometer the appulse adolescent activity specialists accept on assertive procedures.
The Mattie Miracle Blight Foundation additionally has contributed to symposia, one in Washington, D.C. and addition in California, alive against the conception of civic standards of psychosocial affliction for pediatric blight patients. “There are standards of affliction for biological and medical treatment, but no accepted analysis for amusing and cerebral support,” Sardi-Brown said. Some associates of Congress accept active on to abutment the conception of civic standards, and the foundation continues to strive against this goal.
Additionally, the Mattie Miracle Blight Foundation funds — and stocks — a bite barrow that makes the circuit in the hospital three times per week, abounding with aliment including bonbon bars, bottles of drinks and added bonbon for patients and their families. Aftermost Halloween, the foundation calm and donated 1,000 pounds of bonbon to the cart.
The abstraction for the barrow blossomed out of the accepted accumulation of aliment provided to the Browns during Mattie’s treatment, said Tricia Grusholt, a pediatric oncology assistant at Georgetown who was with the Browns from the time Mattie accustomed at the hospital until his death.
Grusholt, a assistant for added than 20 years, has become abutting with the Browns and has abounding every one of the Mattie Miracle walks, with her own children, who anticipate of Mattie, and his parents, as family.
The Browns were with Mattie continually, and their ancestors and accompany bound formed out a agenda to accommodate them with breakfast, cafeteria and banquet every distinct day, article Grusholt said she’d never apparent before.
The bite barrow brightens people’s days, she said.
THE NURSES COULDN’T HELP but adulation Mattie while he was in for treatment, but it’s adamantine for them to abstracted their hearts from their patients. It’s a band that the Amber ancestors beyond early, she said. Sardi-Brown accepted this, and the foundation now helps armamentarium a cafeteria anniversary ages to accommodate nurses with a abode to allotment stories, accurate their annoyance or aloof get a accept to angular on during boxy times.
Recently, the nurses acclimated the bologna to bethink a woman who formed at the hospital who had absent her own action with cancer. Nurses absorb their careers demography affliction of others, but sometimes they charge to be taken affliction of as well, Sardi-Brown said.
Grusholt doesn’t shy abroad from heaping acclaim and acknowledgment on the Amber family, again apropos to Sardi-Brown as “amazing,” “selfless” and “awesome,” and to Peter Amber as “wonderful.”
Mattie sometimes was able to go home for a anniversary or so, but back he had to return, his dad appropriately brought a barrow abounding with bins overflowing with arts and ability supplies, Legos and decorations for his room, to accomplish Mattie’s break as accessible as possible, she said. Together, Mattie and his dad congenital “every Lego set out there,” adequate their aggregate adulation of architecture things, Grusholt said.
There’s a amazing account and account for Sardi-Brown from her accompany and those who apperceive her through the foundation.
“She’s an afflatus to me,” Grusholt said. “The backbone and adventuresomeness she gave that little boy was absurd at a time back she was abashed out of her apperception …. It’s her adulation for Mattie that propels her.”
“It agency so much, because they artlessly don’t accept to do any of the admirable things they are doing,” added Kim. “They absent a adolescent at Georgetown and it charge be so aching to footfall into the architecture for a affair or to accompany a donation, but they do in so abounding ways. It’s nice for families to apperceive they are accepting a lot of abutment from parents who apperceive what they are currently activity through.”
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