Alexi has Pulmonary Arterial Hypertension. Please help Alexi's parents to provide the care she needs and create happy family memories.Auckland
Alexi has Pulmonary Arterial Hypertension, there is no cure.
Life has never been easy for this beautiful little girl from day dot, she was whisked away to NICU where she spent the first 3 weeks of her time in this world, things looked like they had settled but something just wasn’t right, at 18 months Alexi was diagnosed with chronic lung disease and silent aspiration requiring the insertion of a nasal tube for formula feeding.
6 months later Alexi had surgery to have a Mickey button inserted. Alexi had a cardiac arrest not long after the operation, this confirming a diagnosis of Pulmonary Arterial Hypertension, she spent some time in PICU and was hospitalised for an extended period of time. Finally, the day came when Alexi could go home but required the support or home oxygen (yes tied to an oxygen tank 24/7, no fun for any 2 year old).
Alexi's parents, Sharon and Craig, are a hardworking couple who had saved hard and purchased their own home. Sharon had to stop work as Alexi required specific care and was also carrying their second child, so the family was forced to sell their home as they were not able pay their mortgage. Over the following years, the need for Sharon to regularly have breaks from work and the extra cost incurred with Alexi's needs, has meant the proceeds from the house sale have been used up.
Things were going well, the oxygen was long gone, Alexi was going to school and just being a happy kid, then in July 2019 Alexi, now aged 6, started having pulmonary hypertensive crisis and both parents have had the trauma of resuscitating their beautiful daughter. She had surgery to insert a Hickman line and carries a backpack with heart medication which is fed through the line continuously. Alexi is the only child in New Zealand currently receiving this treatment. Unfortunately, this has not been as successful as they hoped and Alexi is still having crisis, which are life threatening, if she doesn't get immediate intervention. Her parents have had extensive training to provide the care needed, which requires one of them to be available with her 24 hours a day. Sharon has therefor had to take indefinite leave from her supportive workplace and provide full time care.
The medical specialists have now said she needs a heart procedure, a balloon atrial septostomy, imminently and have advised the family to spend as much time together as possible and create memories. She will continue to require intensive care thereafter, however will be able to be the active adventurous girl that she wants to be, there is no stopping this girl, she is living life to her fullest with the amazing support and dedication of her parents.
Any donations will help relieve a little stress for this young family, help them to cope with the loss of income and enable Craig to take leave to support his wife and children. It will mean they have some disposable income to have some fun together and help Alexi see and do some of her dreams whilst showing that people care.
Margaret Muir's involvement (page creator)
Alexi's Maternal Grandmother and I are cousins.
Use of funds
Funds will go towards medical costs and enable the family to pay expenses while Mum is unable to work and Daddy takes some leave so they can care for Alexi. Providing some disposable money will enable the family to create some happy memories together.
A message from Sharon, Alexi's Mum:
Thanks you to our amazing friends, family and all the generous people who have supported this page, we went to the snow ❄️. This is one of the things Alexi has been asking to do for years but we have always put it off due to the colder weather affecting her health. We made it before all the snow had melted and it was amazing! The kids had a blast and we even got to build a snowman and snowcat! A couple of other activity’s we had around Taupo was mini golf, another favourite of Alexi’s, and wow the Huka falls are just breath taking. We also went to see the Waitomo caves, I can’t believe the kids actually stayed quiet 🤫 thank you all again for your generosity we are truly thankful
An update on Alexi's health:
The doctors are not wanting to do the procedure just yet. They have consulted with specialists in the UK and USA to gather information to ensure we are all heading in the right direction and that we have thought of everything before going down the invasive route of the balloon atrial septostomy. This would be the last option before considering a lung transplant. The UK doctors have recommended pushing the dose of medication that she receives through the Hickman line higher. Originally when the pump first went on, we increased weekly and her heart showed stress so we slowed down to fortnightly, now they doing it every second day.
Alexi is attending school with Sharon there to support her for a very limited time a few days a week.
The generosity and concern shown for the family is deeply appreciated.
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This page was created on 2 Nov 2019 and closes on 2 Nov 2020.