I was thinking about the very touching post that Ben LeDonni wrote on the LeDonni family blog, explaining how we met. This started me thinking about how much we also relied on the internet, for information and support along the way. I thought I would share some of the sites we regularly use, for anyone interested in doing a little more research. Our story is just one of many, so I also wanted to share the amazing stories, of some special families we have been touched and inspired by.
Ben and Kelly are an incredibly strong couple, who live on the other side of the world in Philadelphia, USA. They have two beautiful twin girls, Gianna and Isabella, who were born premature in January 2010. Gianna was also born with Beckwith-Wiedemann Syndrome and like Dominic, had an omphalocele repair after birth and a tracheotomy to address her airway issues. She also depends on a ventilator to help her breathe. Ben and Kelly have only recently made the transition from hospital to home.
Kelly contacted me prior to Gianna’s tracheotomy, after reading our page on the trachkids.org website, which is a global web based community for families living with a child who has a tracheostomy. Their current kid count is 646 and families can add their story and read stories that have been added by others. It is an extension of the tracheostomy.com website, which has been the internet’s leading tracheostomy resource since 1996. Both are worth browsing if you are looking for information or support. The tracheostomy.com site has a message board and mailing list to link and support parents. We have found this link to other parents extremely useful, whenever we have questions about anything trache related.
Another family who touched our hearts, with their regular contributions to the tracheostomy.com mailing list, are the Newport family. Their son Evan was born with Noonan Syndrome and sadly, passed away on November 27, 2009. Evan’s Dad Scott, is an inspiration to all of us on the list and he actively contributes to a number of worthy causes. He also played a special part in the development of this site. Helping me to recognise what I wanted to focus on most of all. For that I am very grateful. Through his ongoing efforts and willingness to help others, Evan’s memory will live on in the heart of many.
A tracheostomy support group I recently found in Australia, is On Trach. The group was created by parents and is linked to the Royal Children’s Hospital in Melbourne. This is where Dominic now receives his tertiary care and where his next surgery will be in July 2010. This surgery will be to remove his adenoids, remove a small amount of granuloma tissue, to insert grommets and to have another bronchoscope. From there, we will be going for a decanulation trial, either in the same admission, or two weeks later. I hope to have the opportunity to meet up with some of the parents from On Trach while we are there. In particular Gabby, who I have spoken with regularly over the past couple of months.
In January 2010, while Dom was admitted to RCH for his tongue reduction surgery, we were visited by Sarah and her daughter Mollie, who we met on the BWS Chat Group. There are two groups within the Yahoo community, the other is the Beckwith-Wiedemann Group. It was the first time we had met another family affected by BWS. Meeting 8 year old Mollie and being able to talk to Sarah face-to-face was such a wonderful experience for me. Just knowing that we are not alone and having others to share our experiences with has been so helpful. A small group of us have even come together on facebook (Hi Angela, Sharon, Ataya, Rachael, Sarah, Kerri, Kirsty, Marah, Debs, Fiona and Christa).
After Sebastian was born, we became active members of CleftPALS, a support group for families affected by the cleft condition. As the ACT contact support parents for CleftPALS NSW, I thought it would be helpful to put a photo essay of Sebastian’s story, in the hospital’s cleft pack. This is an information pack, given to new parents of babies born with a cleft.
We received something similar when Sebastian was born and found it was an extremely useful tool, when trying to explain to others the process Sebastian would have to go through, to have his cleft repaired. CleftPALS also helped us with finding and ordering the special feeding bottles he needed as well as providing moral support. The group are currently working on a campaign to convince the government that children born with a cleft should be able to access and afford speech therapy. All active state members as well as Speech Pathology Australia support the campaign, named “Give Our Kids A Voice”. Grant and I collected pages of signatures from doctors and nurses as we saw Dominic through surgery, keeping a clipboard of petition papers by his bed and prompting those we met along the way to sign.
Being involved in support groups, has been a very big part of the process for us. We have often looked to others for information and advice, and been there to advise and guide others. It has been a busy two-way street. This sharing process has really helped. We’ve been fortunate enough to meet some amazing families and have made many wonderful new friends, all over the world.
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