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.
Alexi and her family had a fantastic Christmas holiday surrounded by family. Alexi was stable and able to enjoy the festivities and have some time doing normal kid activities and enjoyed a fun day at her home with her cousins from Australia and second cousins from NZ, America and France visiting.
Unfortunately last week she developed a temperature and the doctors said it was a virus. This has developed into pneumonia and yesterday she was admitted into Starship and placed on IV antibiotics and oxygen. She will remain there until they can get her stable again. Alexi is in good spirits and enjoyed winning a castle building competition with Radio Lollipop yesterday.
The family are so grateful for the support they have received that has relieved some of the financial stress from them at this difficult time.
Happy New Year Gordon and Jason. Thanks for this wonderful gift to start the New Year.
Thanks so much for your support. Have a wonderful Christmas.
Thanks for your support. Have a wonderful Christmas.
Thanks so much for your kind contribution. Have a wonderful Christmas.
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This page was created on 2 Nov 2019 and closes on 2 Nov 2020.