SUMMER Hayes was born June 27, 2010 at The Canberra Hospital.
At first her mother Tamara thought she was a healthy baby and they lived with her grandparents in Canberra until January 2011 when they moved to Narooma.
Tamara said Kay Vine at the Narooma Community Health Centre was a wonderful midwife and indicated she believed Summer had hypotonia.
Through Kay, Summer started receiving help from the early intervention team at Moruya Hospital, such as physiotherapy and occupational therapy, who her mother also found to be wonderful.
“Hypotonia is also referred to as ‘floppy baby’ and while I was worried about it, I was also told that some people with hypotonia compete in the Olympics as adults, so that made me feel at a little at ease and she was booked into see a pediatrician in Canberra on March 30,” Tamara said.
“On March 25, Summer and I had a nice morning walk and she seemed quiet but fine but while taking her afternoon nap I thought her breathing sounded 'not right', so I called the Lighthouse Surgery and asked for an appointment.
“I remember at the time being slightly embarrassed because I thought I was being a neurotic first-time mum.”
While at the doctors, Summer’s temperature spiked to 39.9 degrees and she was extremely floppy, a very different floppiness than her usual slight floppiness.
As directed by the “wonderful” Dr Lisa Hide at the surgery, they caught an ambulance to Moruya Hospital where the “lovely” staff informed her that they thought Summer had bronchitis and “just in case” she deteriorated, they should go to Canberra.
“Thirteen days later, Summer, aged nine months and 10 days, died in my arms at The Canberra Hospital from aspirational pneumonia caused by Spinal Muscular Atrophy (SMA) Type 1,” Tamara said.
“Since Summer's death I have chosen to stay in Canberra to be close to my family and I started volunteering for Spinal Muscular Atrophy Association of Australia (SMAAA) and now run the Canberra branch together with my parents, Steven and Carol Hayes.”
SMAAA's chief executive Julie Cini herself lost two babies to SMA.
The little-known condition of SMA Type 1 is the No. 1 genetic killer of infants under the age of 2.
Others suffering Type 2 require ongoing round the clock support. One in 35 people carry the gene. Have you heard of it?
August is SMA awareness month and the association has asked coffee outlets to use take-away SMA “Strong Hearts for Weak Muscles” coffee cups during this time, and to place donation boxes and cards in their shops and to stick posters on their walls.
As of Wednesday, August 3 the following local outlets taking part include the Narooma Ice Creamery Cafe, whose staff are generously donating their tips to the donation box also, Anton's Café, Casey's Café, Roxy's Café, Montague Coffee, Linda's Diner and the Oasis Café.
More fundraisers at Golf Club
“I used to work at Narooma Golf Club and my former colleagues, especially Joely Gelme, Ingrid Wiersema and Mel Ricketson have organised two fundraisers to be held on September 17 at the Narooma Golf Club.”
Planned are a fundraising walk called “Summer’s Stroll” where people should wear purple and will be given a purple balloon.
In the evening for the adults there will be a three-course dinner with door prizes, raffles and more.
The Golf Club currently also has the donation cards at the front office.
“I want to send my sincere gratitude to the whole town of Narooma,” Tamara said.
“I have lived there on and off for the past four years and throughout these years in every way Naroomarans have extended themselves to Summer and myself again and again and again.
“Since Summer was first admitted to hospital through to the present day I feel so blessed to have lived there and to know you all.
“I'm forever grateful to the people of Narooma and look forward to seeing everyone once again at the Narooma Golf Club fundraisers.”
Spinal Muscular Atrophy Association of Australia website is smaaustralia.org.au
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