I had a great Friday night.
I was lucky enough to be chosen to perform alongside ‘Robby Thorne’ and ‘Apera’ in support of a six year old superman named Jethro, who suffers from a disease for which the medication is not currently funded in New Zealand (this medication is extremely pricey).
Friday night was about raising money to support Jethro and his family on their journey.
Robby Thorne and band kicked off the evening with a special guest performance by Sarah Sampson on Violin which was beautiful.
Apera then played a combination of originals and covers on electric guitar, demonstrating his rad looping skills and infectious chilled out vibe.
Last but not least I jumped on and played some of my favourite soul covers as well as original music from my EP ‘Only Human’ and my more recent album release titled
‘L O S T / F O U N D’.
Despite being a good few people in the room this felt like an intimate gig with friends, held at the classic ‘Dogs Bollix’ in Auckland.
Even had a random song request which I absolutely loved!
Check out my album on Spotify —–> CLICK HERE
I am grateful to have been able to take part in something as meaningful as this and alongside such talented musicians, the sound guy was on fire!
Massive props to Black Frog who has been running these events since 2011 and will continue to do so until Pharmac Funds the medication that Jethro needs to beat this disease.
Keep reading for further information on how to donate and get in touch with Jethro’s family.
In October 2010 when Jethro was 8 months old our lives changed overnight.
I took Jethro to Starship Emergency Department thinking he was suffering dehydration from a flu, hoping they could help get some fluids into him. As we were about to be sent home Jethro produced a funky coloured vomit and a nurse decided to do a blood test. It was then we found out his kidney’s were no longer working. Within 48 hours Jethro was in surgery having a catheter inserted through his stomach so he could begin Dialysis to work for his kidneys as his no longer did. That was a shock, but to then find out his kidneys were failing because he had a very rare condition Atypical Hemolitic Uremic Syndrome was a real blow!
There is no cure, and no treatment guaranteed to help him survive. It is just trial and error to keep him stable as this condition is so unpredictable and spontaneous. 60% of children die within the first year of diagnosis. The complications associated with this illness are
• Kidney failure
• Seizures/Neurological problems
• No response to supportive treatments
• Return of HUS even after kidney transplant occurs
• Severe Hypertension (high blood pressure)
We had to begin intense treatment with Plasma Pheresis, which consists of hours of removing his blood, spinning it, depositing it with other blood products and putting it back into his body, and regular infusions of Fresh Frozen Plasma.
What a little fighter he is though! He was on life-support within days of us finding out he was sick, but within 48 hours he was back and smiling away at us.
Since his diagnosis we have spent many months living in Starship, he has undergone many surgeries, and every week we go to Starship for a whole day to have FFP Infusions, we have now had over a year and a half of Plasma Infusions every thursday.
For Jethro to have a chance at a long life we need to get him onto a drug Soliris, as fate would have it the world’s most expensive drug. It it is his only hope of having a somewhat stable life, and is proving to help the few others with this condition around the world. This drug is around $500,000 annually, however, we have recently found out that while his weight range is between 12-20kg it will cost $200,000 annually. He would need to be on it for the rest of his life. We have applied for funding and been rejected two years in a row now as it is an ongoing cost.
It is our mission to somehow get him on this medicine, but everything seems to work against us. We are at a loss as to where to go from here but to fundraise and keep applying for funding. The company who make the drug are willing to give him a 6month dose free of charge, but that is all he will get. We are choosing to not utilise this unless he goes downhill as we only have that small amount available at this stage and would want to use it wisely. Soliris is now funded everywhere else but in New Zealand.
If anyone out there has any ideas, knows the right people and can suggest anything that may be able to help our amazing little boy it would be appreciated.
He is such an inspiration to everyone that has come into his life. He has the happiest outlook on life, smiles 24/7, even during his treatments he laughs. He is such a fighter and is already proving to beat the odds having remained well for the past year and a half coping on just Plasma. Plasma is not a permanent treatment however, one day his body will not respond to it and the Soliris will be necessary. We would love to have Jethro on this before the damage is done.
Any ideas can be submitted to us here:
We have a Trust Account set up for donations or for anyone willing to set up an automatic payment of $1 per week. If 10,000 people were to do this it would cover the costs of his medicine.
The Jethro Morrow Health Trust
38 9012 0102064 00
If you are paying from Overseas:
A deposit can be made directly into New Zealand Dollars from another bank anywhere in the world. You’ll need to make sure you use the following information:
Account name: The Jethro Morrow Health Trust
Account number: 38 9012 0102064 00
Bank: Kiwibank Limited, Wellington, New Zealand
SWIFT code*: CITINZ2X
Correspondents: Use Citibank NZ correspondents for all currencies
Other information/reference: Include ‘forward to Kiwibank’
* The SWIFT code belongs to Citibank New Zealand, which accepts payments on behalf of Kiwibank.
You may be asked to provide extra information like BSB numbers, sort codes, routing codes or IBAN numbers.
These are just different terms used overseas for bank, branch and account numbers.
Just use the full Kiwibank account number we have provided.
If you are wanting to make a donation via internet banking there sometimes may not be enough fields to enter both Jethro’s “account number” and New Zealands “swift code”.
In these cases the “Kiwibank Limited” can be left out but you must make sure you quote the “38” at the start of “Jethros account number”.
Ways you can also support Jethro are:
Enrolling your child in a Free Learning Programme care of Footsteps, they will donate $100 to Jethro http://www.footsteps.co.nz/jethro
Thank you for the support everyone, we are so grateful to all that have and continue to help us on this crazy journey.