Kavanna Jade Trust
Donate to help fund Kavanna’s medication for a better future all! We have set up a page especially for Kavanna Jade and hope you will all share in her journey of living with life-threatening chronic suppurative lung disease and obstructive asthma. And support us in our fundraising along the way.
All donations can be made intoASB 12-3114-0155004-50
Contact Carolyn at: 021 2645706 or 09 3726020
Kavanna Jade the full story
Carolyn’s pregnancy was a long and complicated one. At 31 weeks she went into early labour. Thankfully this was kept under control with complete bed rest and steroid injections to help develop Kavanna’s lungs while still in the womb.
Unfortunately though, at full term, with Kavanna being in distress Carolyn had to be induced. After induction failed Kavanna was delivered by emergency cesarean section.
After a day on oxygen for transient respiratory distress and being under observation for another five days Carolyn was finally able to take Kavanna home. However, this was short lived as at five weeks Kavanna had her first visit to Starship Hospital with what ended up being Bronchiolitis. Oral Steroids were used to manage it and this was the beginning of Kavanna’s on/off love/hate relationship with medication. Unfortunately, steroids only provide her with short-term relief and have not aided in a full recovery.
At six months she was admitted with a wheeze and severe respiratory distress and tested positive for a Respiratory synclinal virus (RSV). At two and a half, she was diagnosed with Asthma by an Asthma specialist. A seizure and turning blue at three and a half saw them being referred from Emergency to the Respiratory team.
After further investigations, Kavanna was diagnosed with Chronic Suppurative Lung Disease and Chronic Obstructive Asthma. Over the past ten years and constant exposure to using medications long-term Kavanna has acquired other medical conditions which send her to the hospital on a regular basis and the Respiratory, Ear Nose and Throat, Bones and Rheumatology Departments work hard to help manage these
She has a wheeze most days or complains of chest tightness, she finds it difficult to keep up with her peers and often has a grey-blue tinge around her lips. Even giggling can set off an exacerbation of her condition.
Management of her condition is by daily medications and regular visits to her specialists at Starship Hospital. On top of this, she is required to be admitted numerous times during the year to have surgery to clear the mucus build up, to be given intravenous antibiotics and whatever else is required to help her to manage her condition.
She has had over 215 admissions to hospital in her fifteen years and last year 2012 Kavanna clocked up 210 days in the hospital. This has not allowed her much time to attend school socialise which her peers. It was initially hoped that she would
outgrow her condition however we were told two years ago that this would not be the case and that in fact, she is progressively getting worse.
The regular lung function tests which measure how well her lungs work and how much oxygen she is getting generally come back poor. This results in starting oral steroids to try and stop the inflammation which can trigger an attack.
Late last year we were told that not only is she getting worse but that her body is rejecting the drugs she needs to help her condition and that the next ten years or less are going to be extremely hard on her and her body. It is possible that with the
the number of complications she is dealing with she could lose her fight with this condition.
Something positive that has come to light in the last month is that there is a new drug out there that could potentially slow her condition down and decrease the number of hospital admissions and exacerbations. Her specialist has said that the negative side to this new drug is that it is not funded even though it has been approved to be used in New Zealand. Kavanna would need to have fortnightly injections at a cost of approximately $3000 for the drug alone and that would not include nursing and day stay costs. It is estimated to cost a total of $48,000 a year.
As a parent I only want the best for her, so we have applied to the Government to see if they can find some funding to help provide this new drug which will hopefully prolong her life and provide some sort of quality of life. The reality of the situation, however, is that this might not happen and we may face the difficult task of trying to raise the money ourselves and then have to keep finding it each year.
It seems unreal to think that money could be what stands between Kavanna living longer and healthier. So with this in mind, we are going to focus on Kavanna’s bucket list, which she put together during her admission in February, and we will focus on her quality of life and making each good day count. In the meantime, we are waiting to hear back about funding.
So we ask all of you to share her journey and share this page with others.