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Matilda’s rehabilitation and life time care

$68,415 of $180,000 goal

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Update: Post Boston- we are home and on the way to ensure our darling Tilly has the best life possible. We are still raising funds to ensure that Tilly has on going physical therapy, speech therapy, occupational therapy and her dietary and other ongoing medical treatment.

We are currently trying to tap into funding that the government can provide, this has been frustrating and overwhelming so most of Tilly’s treatment is being privately funded.

Love steak Tilly



Thank you, we are on the road to saving Tilly's life!

UDPATE: 

**22nd July 

On the road to Boston** 

We are three months out of Boston. We now need to push for the remaining funds to get Tilly to Boston


Since our last update there has been so many changes!



Tilly has has had second embolisation in Melbourne , this came with so many complications that we didn’t expect to see.
Blood clot in her brain- the clot is situated in the vein that drains all blood away from her brain, we are now on twice daily blood thinners. This has now compromised the flow of blood and for the rest of her life can not have IV access to her right hand side. All blood is now flowing down the right side of her neck.
She had a staphylococcus infection, this had her on IV antibiotics for two weeks, during this time she had a number of central lines and these also caused a number of issues.
But she is alive, and home! We need to ensure that Tilly gets to Boston to meet with Dr O to ensure that she has he best quality of life now that she has had a number of complications.
During her last MRI it was discovered that the malformation was pressing against her pituitary gland, this has cause hypothyroidism- she’s not making enough T4 and is on new medication. They’re also unsure of this has also impacted her growth, again we will find out more when we come to Boston.
We have booked (tentatively) flights to fly out on Brisbane on the 5th of October- we are in the process of working with our current doctors and the airlines to ensure Tilly has a smooth, safe and uncomplicated flight over.

We have a Facebook Page that is updated with photos weekly- if you would like to keep up to date with how Tilly is going please follow the link below

https://www.facebook.com/Gettillytoboston/


                                                                -------------------------------------------------------------------

Update 23rd March- the day that changed our lives

Matilda had her first round of surgey on the 23rd of March, in Melbourne Australia. This surgery is the first of two before we head off to the USA to see Dr Orbach. Currently Tillly is doing extremlly well and is scheduled for a follow up MRI on Monday 26th to see the success of the first surgery. 

We are currently still working on Getting Tilly To Boston. Thank you to all the people that have supported us so far! 


                                                                --------------------------------------------------------------------
On 12 February 2018, the sweet & sassy 18-month-old Brisbane girl, Matilda Mahon, (affectionately known as Tilly) was diagnosed with a life-threatening Vein of Galen Malformation and Hydrocephalus which requires her to undergo urgent, life-saving surgery.

Tilly's parents, family and supporters are working hard to raise  approximately $180,000 AUD to get Tilly and her parents, Jane & Matthew, to the U.S.A. so Tilly can receive the treatment/support/consultation she needs from specialist doctors at Boston Children's Hospital and the Royal Melbourne Children's Hopstial. 

Without treatment, Tilly will eventually go into heart failure and pass away. And, distressingly for her family, there is no timeframe on when this might be... it might be 2 years, it might be 2 weeks.


Furthermore, on 13 March, Tilly had a brain seizure that lasted over an over. She is currently confined to Lady Cilento Children's Hospital (LCCH) along with her mother, Jane (who has had to cease working) until such time as she can be transferred to Melbourne.

Tilly's family and supporters, "Team Tilly", are currently campaigning to have this date brought forward alongside their continued fundraising efforts.

~~~

Keep up to date with Tilly's Story and join our community on Facebook: http://www.facebook.com/gettillytoboston

~~~
 
Tilly's Story So Far
From her mum, Jane's, point of view

On 12 February 2018, Tilly was diagnosed with having life-threatening Vein of Galen Malformation and secondary Hydrocephalus. 
A Vein of Galen Malformation is normally diagnosed during routine ultrasounds during pregnancy. However, Matilda's malformation would have been so small during pregnancy that it went unnoticed.
In March 2017, Matilda developed meningitis and from then on suffered a number of health problems, despite continuing to be a sweet, happy little girl. These problems included vomiting, poor weight gain and not meeting her milestones and we thought they were complications from meningitis.
However, in October 2017, Matthew & I started noticing she was vomiting at night and would press her head against the floor while crawling. Our doctors referred Tilly for an MRI. Matthew and I were thinking, "Okay, Hydrocephalus would be the worst outcome..."
THIS wasn't the plan.

Vein of Galen Malformations are extremely rare - you have a better chance of winning lotto than suffering from this condition. These malformations are congenital and normally develop between 6-11 weeks gestation. 

Most babies who have this condition suffer heart failure soon after birth due to increased output pressure from the brain.
More information about Vein of Galen Malformation is available on the Boston Children's Hospital website:   http://www.childrenshospital.org/conditions-and-treatments/conditions/vein-of-galen

Due to the severity of Tilly's condition, Tilly needs to be treated by experienced doctors who have done this surgery before. And, this looks like Doctor Darren Orbach, MD PhD at Boston's Children's Hospital. 

Dr Orbach is a world-renowned doctor who has treated children with much more complex situations than Matilda's. His treatment of Matilda will open up a range of options not available in Australia and has the greatest likelihood of ensuring her survival.

~~~

Funds raised by our campaign will assist Tilly with her on going treaments in Australia and  to pay for medical expenses in the U.S.A., including surgical and specialist treatment, as well as the travel, accommodation and living expenses associated with getting to and from Boston, and residing there during Tilly's treatment. 

~~~
THANK YOU for your support.
We are so grateful that you have chosen to help Tilly and help us save our sweet, baby girl.

With love, gratitude and thanks,
Jane & Matthew Mahon, and Team Tilly. Xo
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We made it to Boston!
Our meeting with Dr. Orbach was amazing, he is compassionate, and really does understand the issues that Tilly and we as a family have to face.

Why did Tilly go to Boston?
There were so many unanswered questions we had that the medical team in Australia could not answer. This is not a reflection on the skills or care Tilly has received but more due to a lack of any clinical history in treating the condition. There are only five known cases of Vein of Galen in Australia which means the symptoms are treated as they occur but the long-term prognosis was not clear. We had to know could this condition limit her lifespan? Did she need radical corrective surgery? Would she be able to lead a productive life? What do we do to ensure her long term safety and development? And many more.
Dr. Orbach answered these questions.

After a detailed review of MRI’s from March and September this year, plus the angiograms and other data from Australia, he has concluded that Tilly does not need further surgery on the Vein of Galen. As a result of the embolization’s done at Royal Melbourne Hospital this vein has reduced in size as the blood flow to it has been reduced, that is great news.

Tilly’s venous system in the brain has rearranged itself to manage the blood flow, some are enlarged and some are closed or narrowed. Critical veins have closed off completely, and others have modified themselves to try and compensate. This will have to be monitored for many years.

What does this mean for Tilly?
This Vein of Galen will not shorten her life span! You have no idea what a relief it was to hear this.
But; She will need intensive therapy for many years, she has some brain damage, which we could see on the MRI’s, and of course we know that her motor skills are affected, she will need extensive therapy for cognitive, motor and verbal skills. She will have to learn to eat solid food, learn to talk as examples.

Dr. Orbach advised that we need to have a pediatric neurologist added to Tilly’s team and to lead in therapy and other remedial treatment long term. We are searching for one now and believe we have found one who practices in the Brisbane area.

In addition, Dr. Orbach has agreed to consult with us and our team long term to advise and help with her rehabilitation, this is amazing. He said to me, “Our Vein of Galen patents are very long term and we work with them for many years as they grow and develop. We don’t have all the answers to this condition as the brain can do things we don’t understand”.

As a result of this and all we learnt in Boston, we know that we will have Tilly with us for a long time and she needs a good medical team to guide her and us through everything she will have to face in the coming years.

We will be closing the Go-Fund-Me page and using the donations, setting up a trust fund for Tilly’s long term medical and therapeutic care which will be costly and which insurance will not cover in many instances.

I want to thank everyone who has contributed money and prayed for her recovery, thank you from the bottom of my heart.

The story is not over but we are moving onto the next chapter.
Tilly at Boston Common
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Hi Everyone,

We wanted to add an update, it is now 16 days until we fly out to the USA, we have our first appointment with Dr Orbach on the 18th of October, we would like to thank everyone for your ongoing support and generosity.. it has really helped us with all of the care and support that Matilda "Tilly" has needed.

Thanks again

Team Tilly
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Hi Everyone,

Just wanted to provide an update. We have booked our flights and appointments! we are on our way!

It is 8 weeks until we touch down in the US of A!

We land on the 8th of October and head up to Boston on the 15th to meeting with Dr Orbach, I am excited and overwhelmed at the same time.

I would like to thank everyone who has helped with our fund raising efforts so far, every little dollar helps.

Matilda is doing well, we are heading to our doctors today for our weight-ins and she has an ENT appointment tomorrow.

In two weeks (on the 20th of August) our darling little girl will be celebrating her 2nd Birthday, we didn't think that we would see this happen, each day that we have with her is amazing

Much love team tilly
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HI Everyone,
Just wanted to provide everyone with an update- we have a FB page that everyone can follow.


https://www.facebook.com/Gettillytoboston/

All updates, events and fundraising information has been taking place here! please follow and share

Much Love
Team Tilly
#gettillytoboston
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$68,415 of $180,000 goal

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