October 2007
Guilianna's Progress (continued)
The doctors had two options to offer. The first was to remove the adenoids and tonsils and the second was to attempt using the CPAP Machine while sleeping. The family has decided to try using the CPAP machine with her first, with hopes that it will help, so that Guilianna does not have to undergo surgery. They are presently taking the steps with the doctors to begin treatment for the sleep apnea.
The Daily Item – August, 21, 2007
Thank you to all of ‘Guilianna’s Angels’
To The Item Editor:
To Guilianna’s Angels, we, the grandparents of Guilianna Ghiozzi, would like to express our gratitude to the Daily Item for the beautiful picture and article promoting the fundraiser held for her on July 21. Guilianna has come a long way since last year’s benefit and we believe all the help and prayers must be working.
We especially want to thank my daughter’s friends for doing so much for her. They all go out of their way to help and organize such a great event. Especially Guilianna’s Godmother, Kim Teague and her husband Jay, who put their heart and soul into everything they do for her.
All her friends, Kristen Connolly, Leah Teague, Tammy Mazola, Mia Carroll, Amberlee LaRocque, God Bless you all. A big thank you to St. Michael’s for the hall and Jack Sherry for the bands, you are all great guys. So many people were involved in collecting food and raffle prizes. A big hug goes out to them: Kevin and Judie Salt, George Rozoplos, Elle Marvin, who came from Las Vegas, and Denise Moroney. The businesses as Angelina’s Sub Shop, Pizza Plus, Tony Lena’s, Spinelli’s, and Shaws, and any I missed we really appreciated everything you did.
Also, a big hug and thank you to Kris Bishop for all he has done to promote the web site, www.guilianna.com. We will continue to keep you posted with her progress.
Again, there are no better caring and giving people anywhere. We are proud to know some of the best people in Lynn. You truly are Guilianna’s Angels. From the bottom of our hearts, thank you. We are forever Lynners.
Jan & Kim Kasle
Weeki Wachee, Fla.
July 10 , 2007
Second Cleveland, Ohio Visit
Due to the success of both the 2006 and 2007 fundraisers, the goal to have Guilianna continue treatment with Dr. Douglas Kerr at Rainbow Babies in Cleveland, Ohio has been reached. Guilianna and her parents went to visit with Dr. Kerr on July 10, 2007. This was the second visit with this specialist, where it was made possible because of the funds that were raised. All of the travel expenses would have been too costly to afford without this help.
Dr. Kerr has conveyed that it is still probable that she may have PDCD Complex, but is not ruling it out, because of further metabolic testing. At this time he recommends that she continue her high fat and low carbohydrate diet and daily therapy. Guilianna, and her parents, will go to Cleveland OH for yearly visits with him, hoping to get a diagnosis confirmed.
July 2007
Second Annual Guilianna Ghiozzi Fundraiser Benefit
Another BIG THANK YOU to everyone who participated in the second fundraiser held for Guilianna on July 21, 2007. The support offered by friends and family will always be remembered. Thank You to Jack Sherry for having the idea for the fundraiser, and to all of the band members, who were extremely nice and put on a great show.
There were four cool bands, The Nation, King Crock Pot, The Cheap Dates, and The Dirt Dogs, who so generously donated their time for the evening. There was food donated by friends, family and local businesses. There were lots of amazing raffles and fun giveaways, thanks to friends and family who made up incredible baskets, including a Red Sox basket, lobster baskets, lottery tickets, etc. Local businesses donated both gift certificates and products/services that were raffled off.
Saint Michael’s Hall was kind enough to donate their facility again, and their friendly staff was wonderful to deal with us for a second time, and were very accommodating once again. The Security Company also donated their services for the night, which were very helpful.
Besides the funds that were raised for Guilianna, another positive outcome of the benefit was meeting an unexpected guest named Deb. She is a holistic healer, who donated her time and energy, for one energy treatment that will be helpful towards Guilianna’s ongoing progress. Guilianna and her mother will continue a relationship with her for further treatments and advice on natural supplementing.
The money raised from this year’s benefit is a tremendous help towards Guilianna’s treatments and needs such as medical supplies, vitamins, treatments, travel expenses to Ohio, and anything else that is not covered by insurance.
The Daily Item - July 02, 2007
Lynn-born girl with rare disease responding well to treatment - by Lisa Goldman
July 21 benefit to help Guilianna continue seeing medical specialist
A former Lynn girl who has cerebral palsy and is also battling a rare metabolic disorder is a happier toddler today, one year after a fundraiser here helped her receive treatment from a top specialist.
And later this month, a second fundraiser will be held in Lynn so that 3-year old Guilianna Ghiozzi can continue that treatment.
From the day she was born, Guilianna has had to fight for every minute of her life. She was born with her mother’s umbilical cord wrapped around her neck and ankle, and couldn’t breathe for the first three minutes of her life.
At 3 months old Guilianna was diagnosed with cerebral palsy as a result of her traumatic birth, and at age 2 she was diagnosed with Pyruvate Dehydrogenase Complex Deficiency, a rare metabolic disorder that prevents her body from converting food into energy and instead tries to take energy from her organs.
It is rare for children with the disorder to reach adulthood. “There’s no cure, but they can try to constantly keep ahead of it with new medicines, and hopefully prolong it until there’s something more that they can do,” said Kim Teague, Guilianna’s Godmother.
Guilianna’s parents, Candace Comito and David Ghiozzi, moved from their home in Lynn to Florida hoping the warmer climate would ease Guilianna’s frequent bouts of pneumonia.
A benefit in Lynn last summer helped enable Guilianna’s family to bring her to see a top specialist for her condition, Dr. Douglas Kerr of Rainbow Babies in Cleveland, Ohio. The fundraiser was a huge success – and so was Dr. Kerr’s treatment.
“She’s come a long way; the specialist is going a great job. She’s definitely getting stronger,” Teague said. With the therapy and a new diet with added vitamins and fat to give her energy, Guilianna is much more mobile. She can not sit unsupported with supervision, drink from her sippy cup, and has begun the commando crawl.
“She laughs a lot, and she’s started to give her mother kisses. For her mom, that was very rewarding,” said Teague. But in order for Guilianna to continue to progress, Kerr advises that she see him at least once a year. She will see him again on July 10.
Jack Sherry, a friend of the family, had the idea for a second fundraiser so the treatment could be continued. The benefit will be held on Saturday, July 21 at St. Michael’s Hall at 25 Elmwood Ave.
Guilianna, soon to be 4, will come up for the benefit from Florida with her parents and grandparents, longtime Lynn residents Kim and Jan Kasle.
Tickets are $10, and there will be four local bands providing live entertainment. Local restaurants have donated food, and there will be raffles and giveaways as well. The event is from 7 p.m. to
1 a.m.
May 18 , 2007
Guilianna's Progress
Just wanted to post a quick note on all of Guilianna’s progress to date. She has been steadily gaining weight and thriving. Guilianna started holding her bottle and sippy cups. She is sitting unsupported with supervision.
Her therapists feel that she has reached such amazing milestones. She has begun the commando crawl, which is pulling herself up with her upper body. Now, she pushes herself up to a kneeling position. She is also starting to stand with minimal support for longer periods of time. Guilianna is able to enjoy life a little more, since she has become more mobile, and she is a much happier and very motivated little girl.
Guilianna’s therapists, doctors, and family are all pleasantly surprised at the amount and speed of progress that she is showing. She has come such a long way and this is all due to her therapists and family working so hard with her at her therapy appointments as well as at home. Finally, she gave her Mummy kisses for the first time and that has made all the hard work worthwhile!!!
April 21, 2007
Second Annual Guilianna Ghiozzi Fundraiser Benefit
Captain Jack Sherry, a guest from last year’s fundraiser and also a friend of Guilianna’s father, David, fell in love with Guilianna and wanted to help in some way. He brought into motion the idea for a second fundraiser.
This year’s fundraiser will be held on Saturday, July 21, 2007 from 7 p.m. – 1 a.m. at St. Michael’s Hall in Lynn. There will be four unbelievable bands who have all generously donated their time. They are - The Nation, King Crockpot, The Cheap Dates, and The Dirt Dogs.
There will be great food, fun giveaways and raffles.
Ticket donation is $10.00.
Come join us again for a great night of celebrating Guilianna.
The Daily Item - 2006
Thank you from Guilianna Ghiozzi's Mother
To The Item Editor:
I would like to express my appreciation and gratitude to everyone who showed their concern and support for my daughter, Guilianna Ghiozzi. Back in May of 2006, a fundraiser benefit was held, which was the true act of an angel, Guilianna’s godmother, Kim Teague, who came up with the idea to have it. Thank you just isn’t enough for all of your hard work, Kimee, and for always being there for us.
Words cannot explain how I feel about all of the effort that was put into planning this event by my friends and family. To each and every one who showed up at the fundraiser, I cannot thank you enough for taking the time to care and to show your support. It was simply amazing to see how there really are a lot of people out there who care. Having all of you there was a wonderful feeling and makes our daily struggles a little easier and also gives me a little more hope for the future.
I also would like to thank the Daily Evening Item’s Editorial Page Editor, Sean Leonard, and writer, Jill Casey, for writing such an informative and beautiful article about Guilianna on May 5, 2007. This additional publicity highly contributed to the success of the fundraiser.
Diana Isbrandtsen from Capt.’s Waterfront Grill & Club put us in contact with Angel Flights, which put us into the hands of Southwest Airlines, who provided the airfare to the specialist in Cleveland, Ohio, which was greatly appreciated.
Thanks to Bob Ledger for the band and Mark Simpson for the D.J. services, who both so kindly donated their time for the night.
I cannot even begin to name all of the businesses that participated and the support was phenomenal. Having a community come together like that makes me appreciate where I came from.
I would like to personally thank Kris Bishop for all of the time-consuming work he did creating and designing Guilianna’s website at www.guilianna.com. His work is incredible as displayed on the webpage. I am so grateful to him for everything he did, and for the work that he continues to do.
Special recognition should be given, for the unbelievable work put into this night, to Guilianna’s grandparents, Kim & Jan Kasle, friends, Kim and Jay Teague, Wendy Flynn, Tammy Albright, Daniella Ghiozzi, Kristen Connolly, Jane Nauss, Amberlee LaRocque, Christine Mitchell, Mia Lee, Tracy Mingolelli, Shannon Cheever-LeClair, Megan Curley, Cari Compton, Elaine Alevizos, Kristina Lang, and Nancy Hood. I have to keep this list to a minimum, so if there is anyone that I have not included, please know you are not forgotten, and that so many more of you are mentioned on Guilianna’s website. I will be forever grateful to all of you for all that you did to make this happen, and for making it possible for Guilianna to receive the best care needed to make her life happier.
The benefit was a huge success, with thanks to all of my girls, and everyone’s support. You will always be fondly remembered by me as Guilianna’s angels. The trip to Cleveland was successful and now Guilianna is on the road to a lifelong relationship with a highly recognized specialist, thanks to all of you.
Candace Comito
Aripeka, FL
June 2006
Cleveland, Ohio Trip
As a result of the success of the 2006 fundraiser, the goal to have Guilianna meet with one of the top specialists in the country was reached. In June of 2006, Guilianna met and began her ongoing relationship with Dr. Douglas Kerr at Rainbow Babies in Cleveland, Ohio.
After evaluating Guilianna, Dr. Kerr does believe that she has a severe case of Pyruvate Dehydrogenase Complex Deficiency (PDCD). He was also able to confirm all of the facts that Guilianna’s family had learned online about PDCD. Sadly, we were not expecting him to say that he thinks she has a severe case of it. The only treatment available is therapy, diet change, and supplements, all of which Guilianna is receiving and have tremendously helped her come such a long way.
Dr. Kerr has requested that Guilianna continue treatment under his care for monitoring specific blood levels, maintaining a care plan, and also as part of his research study in hopes that new information becomes available. She will be going to see him again on July 10, 2007. We will continue to keep you posted with updates as they become available.
The Daily Item – Tuesday May 30, 2006
Thanks to everyone who helped Guilianna
To The Item Editor:
We wanted to express our sincere gratitude for the wonderful article by Jill Casey on May 5 on the front page of The Daily Item for our granddaughter Guilianna. The benefit was a huge success.
We feel so proud of the great people of Lynn for their support and tremendous generosity.
They are the most caring and giving people any where!
The girls, all friends of our daughter went above and beyond all expectations.
Very special thanks to Kim Teague, Tammy Albright, Mia Lee, Shannon Cheever-LeClair, Kristen Connolly, Tracey Fleming, Megan Curley, Cari Compton, Christine Mitchell, Lisa LaRocque, Daniella Ghiozzi and anyone else who helped.
Also all the businesses (way too many to mention) that donated an enormous amount of food and raffle prizes and donations. Businesses from Lynn, neighboring cities and towns as far away as East Boston.
Thanks to St. Michaels Hall for the room, Bob Ledger for the band and Marc Simpson for the DJ services. A very big thank you also to the most talented Kris Bishop for his time and creativity for a beautiful web site at www.guilianna.com.
We will always be grateful for having known the most caring and compassionate people anywhere.
Lynn, we thank you all from the bottom of our hearts, your goodwill and kindness will never be forgotten. You are truly Guilianna’s Angels.
Overwhelmed in Weeki Wachee, Florida, we remain forever Lynners.
Jan & Kim Kasle
Guilianna’s Grandparents
May 12, 2006
Guilianna Ghiozzi Fundraiser Benefit
A HUGE THANK YOU to everyone who took part in Guilianna’s Fundraiser. The turnout and generosity of everyone who attended the benefit was overwhelming as the hall was filled to capacity by 7:30 that night.
There were over 50 donated raffles including a trip to Florida, numerous baskets made by friends and family, and several gift certificates from different businesses for a variety of services and products.
There was an abundance of food donated by surrounding businesses, as well as from family and friends.
Saint Michael’s Hall not only donated their facility, but their staff was friendly, incredibly hardworking, and very accommodating to such a large crowd.
Between the great crowd of supporters and just an overall fun night, the entire benefit was truly a celebration for Guilianna.
The Daily Item - Friday May 05, 2006
Former Lynn girl fights rare disease - by Jill Casey
From the time of her birth, 2 year-old Guilianna Ghiozzi has had anything but a normal childhood existence.
Born with her mother’s umbilical cord wrapped around her neck and ankle, Guilianna couldn’t breathe for the first three minutes of her life. Suffering from a then-diagnosed metabolic disorder, she screamed day and night for the next few months. By 3 months old, she was diagnosed with cerebral palsy as a result of her traumatic birth.
The doctor’s visits and tests continued without diagnoses. Soon she was eating through a tube and her hearing and breathing worsened.
After one too many bouts with pneumonia, her mother and father; Candace Comito and David Ghiozzi, were forced to move from their Lynn home to warmer climates in Florida. New England winters upset Guilianna’s ailments even worse.
At the age of 2, Guilianna was diagnosed with Pyruvate Dehydrogenase Complex, a rare metabolic disorder. The disease prevents the child from producing energy in a normal fashion so her body constantly tries to take energy from her organs. Children with the disorder rarely make it to adulthood.
Despite all of this, the ones who love her the most say you would never know she was sick by the looks of her smile.
“To look at her, you don’t think anything is wrong,” said Kim Teague, Guilianna’s Godmother, who is organizing a benefit on May 12 at 7 p.m. at St. Michael’s Hall at 25 Elmwood Ave.
The benefit is to raise money for Guilianna to visit a specialist on June 8 in Cleveland, Ohio, and to pay for her daily physical, occupational, visual, speech and water-therapy sessions.
“[Doctors] said there are only very rare cases where children can get into adulthood,” said Teague. “I’m just hoping between the constant research that [a specialist] maybe could even tell us the severity of the disease.”
Close to 100 local businesses and community members have already donated to the cause through www.Guilianna.com. Teague said she can provide doctor bills and documents to confirm the authenticity of the cause.
Guilianna will be at the benefit with her parents and grandparents, long-time Lynn residents, Kim and Jan Kasle.
Tickets are $10 and there will be food, raffles and entertainment provided by a DJ who has donated his time for the benefit. The event is from 7 p.m. to 1 a.m. |
