1

Chace’em up the mount 2014

poster (13)

[mls_mark]Chace’em Up the Mount 2014 – Important message. Out of respect to the whanau of little Jack Dixon and the incredibly sad incident at the Mount, we have decided to postpone the “Chace’em Up the Mount” to Saturday December 13th. We have been in contact with a family representative regarding our suggestion to move the date till further in the year. She responded very kindly and insisted that the family supported us going ahead with whatever date we decided on. We send our most heartfelt condolences to them at an incredibly difficult time, our hearts are always heavy when we hear of a family who is facing such heartache. We hope that our supporters, teams and spectators will still join us for this event on Saturday 13th December. The Dream Chaser Foundation will also be donating a koha to the Dixon whanau from this event.[/mls_mark]

View more

CONCEPT2

Dream Chaser Spring Carnival

Looking for something to do in the Bay Of Plenty for the last weekend of the school holidays???

Well we have just the thing. Dream Chaser Foundation along with 2 Worlds Entertainment and Mahon’s amusements are proud to announce the Dream Chaser Spring Carnival . Remember the good old days of the AMP show that would come to town with all the big scary rides that we all loved to go on as kids? well they are back, bigger and better than before! Mahon’s are bringing over 40 of their rides from the big scary Superloop to the smaller carnival style rides and games. This will all be happening at Rex Morpeth park right beside the Whakatane War memorial hall. There will be live entertainment with fire dancers and clowns walking around giving this event the real old school carnival feel. There will also be a food market that will have a huge range of foods available to the public from 1pm on Friday the 10th of October  through till 10pm that night. Then back into it from 10am – 10pm Saturday the 11th October.

 

So if you are looking for a way to entertain the kids for the last weekend of the holidays, bring them down to the Dream Chaser Spring Carnival and let them run loose around the rides and the food stalls.

 

Admission is FREE so come down and have a look and get involved

For more info and to keep up to date with announcements please visit our Facebook page

facebook

 

See you all there

Friday 10th October 1pm – 10pm

Saturday 11th October 10am – 10pm

herald pic

Charity fills void for Chace’s parents – National – NZ Herald News

Couple have immersed themselves in fundraising for others since their brave little boy lost his cancer battle.

Keri and Ryan Topperwien set up the charity after their son Chace died in June. Photo / Christine Cornege

A charity in memory of Chace Topperwien, the little boy whose brave cancer battle captured the hearts of thousands, is living up to the legacy left by its namesake.

The Dream Chaser Foundation – A Chace Topperwien Charity has already touched the lives of other child cancer sufferers and their families through donations, raising money and boosting awareness of the need for bone marrow donors.

The charity was set up by Chace’s parents, Ryan and Keri Topperwien, after their only child died in June from a rare and aggressive form of leukaemia.

So far the foundation has donated toys and a fish tank to the Starship and Ronald McDonald House in Auckland, and raised $7000 at a fun run in a “sea of yellow” T-shirts – 3-year-old Chace’s favourite colour.

But most importantly, the charity has encouraged at least nine people to become bone marrow donors and more than 50 to sign up for the blood test.

One person who became a donor because of Chace has now been called on as a bone marrow match.

Dream Chaser is targeting ethnic donations, particularly from Maori and Pacific Islanders, because when Chace – who was of Ngati Awa and Ngati Porou descent – desperately needed a bone marrow match, none could be found worldwide.

The number of Maori and Pacific Island bone marrow donors is tiny compared with Europeans.

It meant Chace had to have a stem cell transplant which ultimately was not successful.

Mrs Topperwien said a bone marrow drive in Gisborne and the East Cape had been a success, with three van loads of people travelling from Ruatoria to be tested by the New Zealand Blood service.

She said one of the charity’s main goals was to become synonymous with bone marrow donation.

“We want people to say, ‘Oh Dream Chaser they do bone marrow’.”

The Topperwiens have spread the word at a Ngati Awa festival in their home town of Whakatane, and as guest speakers at a corporate dinner in Cambridge in early November, the same day the charity became official.

They are planning a Chace’em Fun Run in Whakatane on January 19 similar to one held at Hamilton’s Lake Rotoroa in November, which they aim to make an annual event.

The couple, both 29, have also secured sponsorship of the “Joy Jar” – made by American girl Jessie Rees who died of cancer in May this year.

The jars, made famous through social media, are filled with fun knick-knacks for sick children and will be given away by the charity.

Later in the year Dream Chaser will hold a charity ball and a fight night in Hamilton, to help pay for renovations to extend Ronald McDonald House, followed by a summer concert featuring family friends Kora.

Another initiative includes securing a celebrity to represent the foundation, which has the backing of expatriate businessmen Eric Watson and Owen Glenn.

The charity’s momentum has met a few stumbling blocks, but the couple have been learning on the job.

Mrs Topperwien, who works full-time as the charity’s director, said while Dream Chaser gave her strength to get through each day, she and her husband were taking some time out over Christmas and the New Year.

“We just cancelled Christmas. It was always about Chace and Chace’s presents. It just means nothing to us any more.

“New Year will be even tougher. It was the most shattering time ever for us [in 2011] because we found out New Year’s Eve [that Chace had relapsed].”

He was given only weeks to live, but fought for six months.

After he died, the couple decided to use money left over from a fundraising campaign for an expensive drug trial in London to fund the charity.

Now they subscribe to the motto of Jessie Rees – “Never Ever Give Up” or “NEGU”, a motto Chace seemed to live by.

For more information visit www.dreamchaser.co.nz

By Natalie Akoorie

 

 

Charity fills void for Chace’s parents – National – NZ Herald News.

Te Ara & brother Taniora allowed out for the day to Ronald McDonald House

Te Ara Kingi’s story of courage and hope

 

 Throw me a lifeline!!

Life  throws some curve balls, but every now and again a lifeline is dropped in that brings new hope.

Here we are, almost 2 years down the track since our daughter Te Ara Puketapu Kingi was diagnosed with Myelodysplasia and Vasculitis,     with suspected Lupus.

As a bit of background – she was diagnosed with Acute Myeloid Leukaemia (AML) at the tender age of 3, treated with chemotherapy and went into remission.

However in November 2010 (she’d just turned 8), her health took a downward spiral and little did we know ….. we would be heading back to Starship to fight the monster again.

Te Ara administering her own meds in Starship in May 2011

In order to treat her this time around, she needed to have a bone marrow transplant.  Our Maori heritage put us at a slight disadvantage.  There did not appear to be enough information for people to truly understand the benefits of donating bone marrow.  In a lot of cases unless someone close to you required a bone marrow transplant, people didn’t really think about donating, let alone have a desire to …… and that’s just the way it seemed.

With all of this in mind, we immediately set about on a campaign to get our people to donate bone-marrow in order for us to find a perfect match for our daughter (needle in a million hay-stacks!).  We were fighting against time and every day was precious.  We face-booked, we emailed, we put messages on Tangatawhenua.com, we talked amongst friends and family and did all we could to get the word out there.  We had a huge response and were thankful that people really understood our plight to S.O.D “Save Our Daughter”.

People were donating up and down the coast of New Zealand.  Even friends and family in Australia were eager to donate and see if they could help our girl.  And so it snowballed.  Yes, the campaign had grown into a nationwide hunt for the perfect match.  We even educated people along the way with the pure fact that if they weren’t a match for our girl, you could well be a match for another.  We tried to develop a “feel good” factor into our campaign because surely if you could help save a life, then you were “paying it forward”, to a large degree!

Te Ara and her cousin Awhina giving blood! Good on you Awhina!

A donor was found for Te Ara but unfortunately for their own personal reasons they decided not to donate.  This was hard to face – we had to keep the faith and had no time to wallow in our sorrow – we picked our heads up and decided that there was surely someone else out there.

Time was of the essence, so our Oncologist decided to go world-wide – search the world-wide database.  We distinctly remember the day she phoned to say that they had found a baby stem-cell match in Singapore.  The words “not a perfect match” would stay with us but we had to move fast as the blasts (cancerous cells) were multiplying in Te Ara’s system.  A “lifeline” had been thrown to us and we were going to cling to that and not let go.  With karakia (prayer) constantly in our hearts we gave thanks to the donor and wished him/her well in life.

The bone marrow procedure was performed.

Te Ara receiving her precious stem cells

Te Ara’s stem cell transfusion

Every now and again we pay tribute to those loved ones whose memories remain forever in our hearts.  We live in hope of good health for those here today and trust that the bone marrow register will continue to grow.We cannot begin to explain the importance of “throwing a lifeline”.  We would hope that through our journey, through education, word of mouth and/or experience, people of all ethnicities and religions may begin to understand that by becoming a bone marrow donor, you are providing a “miracle”.  You are literally giving of your life to save another.

Bone Marrow donations have saved lives and will continue to save lives!!

Kia Kaha Kia Toa Kia Manawanui mo ake tonu atu.

Na, Shar & Taniora Kingi

Te Ara September 2012 – happy, healthy and looking awesome!

 

nz-bone-marrow-donor-registry

What is bone marrow and how can I help?

 

Bone marrow was a foreign term to us. What bone marrow is and what it does is not widely known but for those people receiving treatment for blood disorders, the medical descriptions of bone marrow become second nature. Parents and children alike learn and become fluent in a second medical language. Below is a description of what bone marrow does and why raising awareness about bone marrow donation is one of the Dream Chaser’s major goals. It is written from our perspective, using our language, and from our experience. For more detailed information, we have included links at the bottom of the page.

What is bone marrow?

Put simply, bone marrow is the stuff that fills our bones. It is the place where all of our blood cells are developed.  Red cells, white cells and platelets are the three main types of blood cells in our bodies, and they all play a vital role in keeping our bone marrow and bodies functioning properly. For example, red cells contain hemoglobin which are the oxygen transporters and carbon dioxide “expellers” (taking the carbon dioxide to the lungs to be breathed out). White cells are the army that fight foreign threats like infections and platelets are in charge of ensuring the bloods clotting mechanisms are functional. The analogy that is often used to visualise the process is that our bone marrow is a “blood cell factory”. Cells only have a limited life span so a healthy body is constantly replenishing it’s stocks.

What is a bone marrow transplant?

One way to treat some blood cancers and other immune disorders is to get rid of these unhealthy cells (which is what chemotherapy does) and replace the marrow with a healthy cell population.  The job of these new cells is to rebuild the body’s immune and blood systems in order for the body to function properly as a whole.  A common way to do this is through an “Allogenic” transplant where someone else’s healthy and compatible cells are literally injected into the recipient’s body. While the process sounds intense, it is not as surgically invasive as the word ‘transplant’ suggests.  Instead, it’ similar to a transfusion where a portion of the donors’ healthy cells are extracted and then intravenously given to the patient similar to a blood transfusion. There are two types of transplants, a sibling allograft transplant or a matched unrelated donor transplant. The first type is when a sibling of the patient has a compatible tissue type, however if this is not an option, a person who is a suitable match, becomes the donor for the transplant. In the case where neither of these are an option, patients may receive a stem cell transplant. This is where stem cells have been collected from an umbilical cord of a baby and stored until needed. This is known as a cord blood transplant.

How can my bone marrow help?

Only one in three patients has a matched family member. This means that the other two patients have to search the international donor database and hope for a match. Your ethnic background plays a big role in whether you are likely to find a match. Currently there is about 19 million people on the donor list, however only around 7000 of those are of Maori and Pacific Island ancestry, which significantly decreases the likelihood of finding a match.

If you have Maori or Pacific Island ancestry you could save a life by joining the bone marrow donor database. You may never be called as a match but if you do then you could mean the difference between life and death for the patient.

 

[mls_h2]NZBMDR are currently recruiting:[/mls_h2]

  • People aged between 18-40 years with Maori or Pacific Island ancestry or an ancestor from any NZ ethnic minority group (or)
  • People aged between 18-60 years (regardless of ethnicity) who have previously been tissue-typed as a platelet donor or for an overseas bone-marrow registry and
  • Are able to meet the NZ Blood Service requirements to donate blood
  • Are willing to donate bone marrow to any patient anywhere in the world

What is the process?

It’s simple! Just visit New Zealand Bone Marrow Donor Registry (NZBMDR) and register your interest. Here you will be asked to donate one unit of blood. You will be asked to complete a NZBMDR consent form allowing blood to be taken for tissue-typing tests. Once you are on the list, thats it! if you are found to be a match, then there are two types of bone marrow donation procedures:

Peripheral Blood Stem Cell collection (PBSC) – this is where your stem cells are collected from a vein and then inserted into a machine. The stem cells are extracted from the rest of your blood and then this blood is pumped back into you. This procedure can take up to 3 -4 hours. Prior to the actual transfusion you may be given a medication known as GCSF which attempts to boost stem cell numbers since naturally the body does not create a large amount.

Pelvic hip bone collection – this is where bone marrow is collected in a syringe from your pelvic hip bone under anesthetic. The operation usually takes about two hours and often requires a night in hospital as a precautionary measure. Healthy bone marrow regenerates quickly so the patient can usually resume normal activity within a few days post operation.

I want to donate my bone marrow, now what?

Contact the New Zealand Bone Marrow Donor Registry (NZBMDR) and register your interest in joining up.

Phone

0800 800 256 or (09) 523 5756

Fax

(09) 523 5757

Email

nzbmdr@nzblood.co.nz