MEGAN HENRY Complex Congenital Venous Malformation of the Mediastinum, neck, throat and head.
Our beautiful sister, daughter, mother, relative, friend, colleague and valued community member. After 18 months of debilitating symptoms, Megan was diagnosed in January 2018 with a Rare and Complex Congenital Venous Malformation that includes two large saccular aneurysms of the Superior Vena Cava & Brachiocephalic veins. The venous malformation also extends into the deep spaces of the neck, throat and head. There have only been a handful of cases recorded in the world that are as extensive or similar. This rare and complex condition extends into her neck muscles, throat, superiorly surrounds her oesophagus, trachea, larynx, vocal chords and extends to the Clivus at the base of the skull and through the C1-C4. The multiple VMs cause immense pain and restrict her breathing and speech when it expands due to any venous activity including laughing, talking, crying and exercise. Due to this Megan has had to heavily reduce her physical activity, the use of her voice and also her work. This condition is unable to be treated in WA due to its complexity.
.. Plan A: Megan will be taking 2-3 months off work, this October, flying to Sydney where a multidisciplinary team of specialists will perform Interventional Radiology surgery which involves the Intensive Care Unit post surgery. Megan will need to be in Sydney for 4 weeks in November/ December for surgery and recovery. They are looking at multiple sclerotherapy surgeries using chemotherapy for this condition to be conducted at Sydney's Westmead Hospital under Radiological Interventionist, Dr Luke Baker with Vascular Anomaly Specialist Professor Kurosh Parsi. Prior to this surgery Megan is required to attend Westmead hospital, for Angiogram Mapping of her veins and aneurysms to complete the diagnosis and present to the multidisciplinary team for review. Further surgeries and aneurysm repair will be needed again eight weeks later to ensure these malformations do not continue to grow taking this journey well into 2019. This is a permanent condition which requires continual treatment, surgery and review to keep it under control.
.. Plan B: If unable to be treated in Sydney or elsewhere in Australia, Megan will need to fly to Colorado, USA for the above Surgery and treatment. (Plan A is clearly the preferred option!)
.. Megan is a Mentor, Coach, Author, Mental Health Advocate and a support for many within our small Communities and surrounding Districts contributing immensely on multiple Committees, in particular tennis and netball, over a 20 year span, often at the forefront of organising these types of Community Fundraisers, Sporting Events and accessing Grants for the benefit of her communities. Megan has had such an impact to both Adults and Children’s lives with many hours of her time all done with Love and Compassion. As a previous Shearing Contractor Megan has organised many Working Busy Bees for people in Crisis, Life Changing Circumstances, Funerals and still continues to be involved at any time this arises.
.. So we come to you on behalf of our beautiful Megan, to see it in your heart through this time of her extreme need and life changing circumstances, that you may be able to gift a donation/Koha in support of the long road aheadfor Megan's surgeries in Sydney.
.. Your heartfelt contribution will support Megan with multiple flights to Sydney and back, accommodation pre and post Surgery, consultations, scans, loss of income and everyday living expenses that she will incur during this time while unable to work. We are rallying together as friends and Community Members to give back to Megan in her time of need as she has always done so for others.
.. Thanking you in advance for your contribution, we are so grateful. This Go Fundme Page has been developed by Shelley and Johnine with James and Louisa Dare in conjunction with Megan's family. .. Funds raised will be used specifically for:
.. * multiple flights to and from Sydney for Megan and a carer * extended accommodation and other travel expenses * loss of income support * everyday living expenses while undergoing treatment and recovery. ￼