Meet Lara Frankie Hollis.
Lara is four and on the 1st of February 2018 will undergo her third open heart surgery. This surgery is so complex and high risk because of Lara’s congenital defects making normal procedures not suitable and Doctors and Surgeons having to tailor make a surgery more suited to the make-up of Lara’s heart, along with her other defects as there are 7 in total. This comes with increased risk and a long recovery time.
Lara’s parents found out about her condition after their 20 week scan, which was followed by many specialist appointments in which they received conflicting opinions as to whether they should terminate their pregnancy as they couldn’t be certain if she would survive or what her quality of life would be like. At the time they were living in Canberra and were advised Lara would need to be delivered in Sydney as she would immediately be transferred to Sydney’s Westmead Hospital. Already having two older children they made the decision to move to Sydney to be closer to the hospital and so they could keep their family together through so many uncertainties.
On the 15th April 2013 Lara arrived into the world with a number of problems linked with congenital heart disease, she is so complex she doesn’t have one specific diagnosis. Her condition comes under Hypoplastic Left Heart Syndrome which is one of the most severe forms of heart defects and listed are all her conditions:
Aorta arising from R ventricle
Above are the medical terms but a basic description would be that her heart is a mirror image to that of a normal heart including being on the opposite side, her heart pumps back to front, she has a hole in her heart, it’s enlarged, arteries are missing or haven’t formed correctly, she has no spleen and two right lungs.
After birth Lara underwent her first lifesaving open heart surgery and then again at 6 months old, which improved blood and oxygen circulation around her tiny body, beating the odds and pulling through. She spent a long stint in and out of NICU, and when she was finally discharged home she was still in and out of hospital with health and feeding problems.
Once Lara’s health stabilised for the time being and knowing that all going to plan her next surgery wouldn’t take place until the age of 4 her family decided to move from Sydney as the cost of living was starting to take its toll. Needing to still be close enough to hospital care for Lara they made the move to QLD where Lara has undergone numerous procedures.
The beautiful Hollis family have been through so much and now at 4.5yrs old Lara’s oxygen levels are dropping and normal activities are becoming more exhausting for her. Her next surgery scheduled for the 1st February 2018 is essential and lifesaving and without this she would go into cardiac arrest. In the upcoming surgery, the Fontan can be performed several different ways ensuring as much blood flows to the lungs as possible but for Lara these options are unable to be performed as ‘normal’ due to the complexity of Lara’s condition which comes with greater risk and longer recovery.
Unavoidably Kevin has recently started a new position with work and will be taking leave but this will need to be unpaid leave as he won’t have accrued enough leave entitlements. With doctors predicting a long recovery and many of the early days being spent in ICU, Lara’s parents Kirsteen and Kevin want nothing more than to be able be spend all the time they need, and want, with their daughter during this time. Unfortunately this will come with the financial pressures of everyday living, the running of their home, medical bills associated with medications and specialist appointments, travel/parking and childcare arrangements for Lara’s 3 siblings.
Kirsteen and Kevin don’t live locally to family and with a two hour round trip to the hospital along with the uncertainty surrounding Lara’s surgery and recovery time they will need to make care arrangements for children and at times this will come at the last minute.
Doctors are predicting a long recovery for Lara and Kirsteen and Kevin feel uncomfortable asking for financial help. While money won’t change Lara’s prognosis it will ease some of the financial pressures whilst Kevin is unable to work, allowing them to focus on Lara’s recovery and caring for their three other children.
If you are willing and able to help during the tough times ahead, this young family would be so very grateful. We all know too well there are so many charities and personal fundraising pages and whilst we can’t commit to them all please keep in mind: what you may think is a small donation, every cent and dollar will help immensely meaning an extra day that doesn't need to be an additional worry for Lara's parents.
Lara is the most gorgeous, cheeky, happy fun loving little girl who’s been able to help Victor Chang being the face of their campaigns. She adores playing and spending time with her friends and siblings. She loves anything to do with ballet and has a purse collection to rival any other. Lara is the bravest little Heart Warrior with so much fight left.
Kirsteen and Kevin would have never started this page being the humble people they are so I, Danielle, their close friend and neighbour have taken it upon myself to ask you all for the help they all need along with Kirsteen’s sister Heather. If you are unable to help support Lara’s family financially please share this page so we can reach as many people as possible or if you are able to help the family in any other way please contact Danielle or Heather.
Any monies raised additional to the expenses required will be donated back into Cardiac Research to help other families as every day in Australia eight babies are born with a heart defect and every week four precious lives are lost.
Thank you all and sending so much love to the Hollis family xxx
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