Get Tilly To Boston | Community
Get Tilly To Boston
Phone: +61 410 120 336
Reviews
to load big map
25.01.2022 Happy New Year everyone; this year we hope to be focusing on Tilly's health and physical therapy. We start back this week with seeing the doctors and physical therapy. Next week she has an appointment with her gastrointestinal doctor- to discuss her feeding tube and what the plan of attack is for 2019. We will also be changing the go fund me over, we are moving to setting up Tilly's rehabilitation fund: we are working with Queensland Health and the relevant people to see what funding is available. This year is all about making small positive steps and to share these with you! Much Love Team TIlly
25.01.2022 We saw a back up neurosurgeon today as our normal one was off sick Results are in; not what I wanted but still good results. Matildas clot has started to shrink, theyre working out now how much longer she needs to be on the blood thinners. The hydrocephalus is stable- they wont do a shunt unless she is symptomatic- so thats wonderful as she hasnt had any vomiting for about a month. The veins in her head and neck are still quiet large, her jugular is taking most of the flow and is very large. The good news is shes stable, the part I dont like; no one can tell me what normal is or if we need to worry. But weve been given the green light to fly to Boston!! I cant wait! We need Dr O to give us the plan of attack and what is expected moving forward for Tilly!!
25.01.2022 THANK YOU: I havent personally been able to thank everyone that has helped us raise funds for Tilly. We will be having a silent auction over the next few weeks. I would like to thank the following people for raising money or donating time or products to help our Darling Tilly Candybomber Anna Siddans Maiko InoueShell RichterLove Henry Sarah J. RobinsonTara Keddie Danielle Esther AltmannEmily BucklandBrigitte Rathbone Erika J Johnson Sally McErleanAngela McHardy... Also MASSIVE SHOT OUT TO Flight Centre Australia and Air New Zealand for their help and generosity with the flights to Boston! Watch this space! thank you everyone xoxo Much Love Jane and Tilly
23.01.2022 Five people have purchased tickets... at this rate everyone will get a prize!!! Keep sharing the main post on this page!!Five people have purchased tickets... at this rate everyone will get a prize!!! Keep sharing the main post on this page!!
22.01.2022 Hi everyone- we are still fundraising to help get Tilly to Boston. If everyone can please share this link- and ask your friends to do the same. Even if you have a spare $5 it all helps... https://www.gofundme.com/gettillytoboston
22.01.2022 Last two days to purchase raffle tickets to help Tilly and her family. Items will be draw tomorrow night by James (Tillys brother) Thank you to everyone who has support us this far, Tilly still has a long way to go.. but, each day she is getting closer to see Dr O and the wonderful team in Boston. ... 17 days until the family takes off!
20.01.2022 Ok Facebook Mummas: Im looking for a double pram. We need one that will hold both J & M and not be too chunky/bulky... Im ok to source something when we arrive in the USA or hire if anyone knows of a reputable company
19.01.2022 Were at our favourite place LCCH!! Tilly is having a Synacthen or ACTH simulation test, this test is testing for Addisons diseases. The doctors suspect that her Malformation has pressed on her pituitary gland and caused some damage. We will get the results next Wednesday!
19.01.2022 Today we see the endocrinologist to find out the results of Tillys ACTH test. Im worried, as Im not sure if Im going to@be ok if it comes back that she has Addisons diseases. I know we live in a time of wonderful medical care, Im overwhelmed for her. Not only does she have this Malformation but all these secondary complications that come along with it. This year has been so hard, emotionally and physically, not just on Tilly but the whole family. With each day Im grateful that we still have her.... but I also wish we didnt have to endure all this pain #veinofgalenmalformation #matildamahon #mydarlingdaughter #addisonsdisease
19.01.2022 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 Gal...Continue reading
18.01.2022 We have extended the date for the raffle. It will be drawn this Friday 21/09 he Get Tilly to Boston Raffle To purchase tickets please follow the steps below:... 1- Go to https://www.gofundme.com/gettillytoboston&rcid=r01-15348334 2- Donate to purchase your tickets- 1 Ticket is $5 3 Tickets is $10 3- Once you have done this please comment paid and how many tickets on this post. Please only use this post I will note down everyone that has entered the raffle and have my son James draw out the winner on Facebook on 15th of September at 8:00pm. Please forward details around- this post will be pinned to the top of the page for everyone to find. Items up for grabs are * Signed 2018 Brisbane Broncos Jersey * Signed 2018 Womens Rugby Union Jersey- Reds * Voucher from Love Henry * Le Creuset Cooking Pot valued at $499 * Three (3) nights accommodation at the Gingerbread Cottage Somerset Dam- valued at $600 https://www.homeaway.com.au/holiday-rental/p9227515 * Two Norwex packs- 1- with the amazing Norwex Mop valued at $265, 2- has a variety of Norwex products valued at $322.50. Packs in pictures Much more! there is still time to donate so please if you would like to help us please send me a DM by Sunday 26th of August. https://www.homeaway.com.au/holiday-rental/p9227515 MUCH LOVE TEAM TILLY
17.01.2022 The test results are in...... we DONT have ADDISONS #fistpump #thankgod#veinofgalenmalformation
17.01.2022 Second visit to LCCH this week- Tilly has just had to be sedated to have her blood tests. This blood test is to check her clexane levels in her blood. Shes just finished her first month treatment for her blood clot- we have two more months to go
17.01.2022 The Get Tilly to Boston Raffle To purchase tickets please follow the steps below: 1- Go to https://www.gofundme.com/gettillytoboston&rcid=r01-15348334... 2- Donate to purchase your tickets- 1 Ticket is $5 3 Tickets is $10 3- Once you have done this please comment paid and how many tickets on this post. Please only use this post I will note down everyone that has entered the raffle and have my son James draw out the winner on Facebook on 15th of September at 8:00pm. Please forward details around- this post will be pinned to the top of the page for everyone to find. Items up for grabs are * Signed 2018 Brisbane Broncos Jersey * Signed 2018 Womens Rugby Union Jersey- Reds * Voucher from Love Henry * Le Creuset Cooking Pot valued at $499 * Three (3) nights accommodation at the Gingerbread Cottage Somerset Dam- valued at $600 https://www.homeaway.com.au/holiday-rental/p9227515 * Two Norwex packs- 1- with the amazing Norwex Mop valued at $265, 2- has a variety of Norwex products valued at $322.50. Packs in pictures Much more! there is still time to donate so please if you would like to help us please send me a DM by Sunday 26th of August. https://www.homeaway.com.au/holiday-rental/p9227515 MUCH LOVE TEAM TILLY
16.01.2022 Over the next 14 days we will be having a raffle/auction of some items to raise additional funds for Tillys Trip to Boston. We have the following items up for grabs * Signed 2018 Brisbane Broncos Jersey ... * Signed 2018 Womens Rugby Union Jersey- Reds * Voucher from Love Henry * Le Creuset Cooking Pot valued at $499 * Three (3) nights accommodation at the Gingerbread Cottage Somerset Dam- valued at $600 https://www.homeaway.com.au/holiday-rental/p9227515 and much much more- if you would like to donate please send me a quick DM. Information around tickets, how to purchase and additional information will be posted over the next 24 hours! Thanks everyone- 8 weeks until we fly out! Love Team Tillyl xoxo
16.01.2022 Today Tilly has her follow up MRI, this MRI will tell us if her DVT (deep vein thrombosis) has stabilised, it will also show how her hydrocephalus is tracking and if her ventricular system is stable and most importantly to see how her Vein of Galen Malformation is going. She will also have her battery of blood test to check on her iron, B12, liver, kidneys, growth hormones etc... and a new NG tube!! Below are the last images of Tillys brain!!
14.01.2022 We are on the count down, 16 days until we fly out to the USA. We have our first appointment with Dr Orbach on the 18th of October. All Tillys medical files and images have been sent in anticipation for this consultation. We have our list and are hoping that we can get the answers and treatment/plan that this darling little girl needs. We would love to thank everyone for their ongoing support during this time, Team Tilly Thank you so much... xoxo
14.01.2022 This past week has been insane with the number of appointments miss Tilly had.. but its been a good week. Tilly didnt have Addisons She has lost about 500g since weve been home We have her next MRI booked in for July... Tilly took her first steps! Shes only done it once Her intake of solids has started to increase!! We have a clear plan for her feeding and speech EEG and Heart Echo have been booked If you can please share this post or the link to help raise money for Tilly to get to Boston. We are now needing to ramp it up!! https://www.gofundme.com/gettillytoboston
14.01.2022 Merry Christmas everyone! What a year it has been! We have been on the down low since we’ve been home. We’ve been working really hard with Tilly’s doctors and physical therapy team to ensure that she has the best chance possible. I didn’t think in a million years we’d have the year like we have had... but as a team, as a family we have come out the other end. Watch this space as next year, we will be making it the year of Tilly!
14.01.2022 Preparing for the raffle
13.01.2022 We have just had Frankie4 donate a $250 voucher for the raffle! Thank you so much https://frankie4.com.au/
13.01.2022 Were here in Boston! Our appointment is at 1:00pm est- Im exhausted and over, its raining and cold... but Tilly is happy and loving it! The one thing I am missing is coffee, really Aussie coffee
13.01.2022 Thank you to everyone that has purchased tickets... the draw will take place at 8:00 thanks Team Tilly
12.01.2022 Getting ready for her MRI
12.01.2022 Today we celebrate Matildas second birthday! If you asked me seven months ago if we would have seen this day I would have said no. There were so many times that we could have lost her, so many nights that I didnt think we would come out the other side. Our darling girl has made it this far- we still have a long way to go... We fly out to Boston in about 6 weeks!!... Happy birthday darling girl! We all love you so much!!
11.01.2022 The Raffle will close tonight at 7:00, this will give us time to ensure that we have everyone in the draw!
11.01.2022 We’re here in Boston! Our appointment is at 1:00pm est- I’m exhausted and over, it’s raining and cold... but Tilly is happy and loving it! The one thing I am missing is coffee, really Aussie coffee
11.01.2022 We have 14 prizes up for grabs tonight!! Good luck to everyone
10.01.2022 Merry Christmas everyone! What a year it has been! We have been on the down low since weve been home. Weve been working really hard with Tillys doctors and physical therapy team to ensure that she has the best chance possible. I didnt think in a million years wed have the year like we have had... but as a team, as a family we have come out the other end. Watch this space as next year, we will be making it the year of Tilly!
09.01.2022 7 days until we fly to the USA. 19 days until we meet with Dr O. Bring on the next month of excitement, anticipation and apprehension Bring on the new chapter of Matildas story...... Were still raising money! #veinofgalenmalformation #matildamahon #veinofgalen #usa #boston Boston Childrens Hospital
08.01.2022 You see this darling little face.. well we have had 6 hour stay in LCCH tonight all because she hit her head Tilly is currently on blood thinners - from her clot in the brain . Any small knock to the head can cause a bleed So here we are on a Wednesday night.. we were seen right away and I thank the lovely doctors and nurses as they understand Tillys complexity and like me dont take risks.
08.01.2022 Hi Everyone, we are working on the raffle.. Over the next few days you will start to see photos of the items that will be up for grabs. TICKETS are as follows: 1x TICKET- $5... 3x TICKETS $10 If you would still like to donate to the raffle please let me know! Thanks Team Tilly
07.01.2022 THANK YOU: I haven't personally been able to thank everyone that has helped us raise funds for Tilly. We will be having a silent auction over the next few weeks. I would like to thank the following people for raising money or donating time or products to help our Darling Tilly Candybomber Anna Siddans Maiko InoueShell RichterLove Henry Sarah J. RobinsonTara Keddie Danielle Esther AltmannEmily BucklandBrigitte Rathbone Erika J Johnson Sally McErleanAngela McHardy... Also MASSIVE SHOT OUT TO Flight Centre Australia and Air New Zealand for their help and generosity with the flights to Boston! Watch this space! thank you everyone xoxo Much Love Jane and Tilly
07.01.2022 We have exciting news! This is the last photo I will be posting of Tilly with her NG, on Friday she will have her PEG placed!! Im beyond excited- I know its not normal to be excited about your child having surgery but this is a step in the right direction for Tilly to start being a normal toddler. She will be able to go swimming, days at the beach & return back to day care!! #gotillygo #veinofgalenmalformation
06.01.2022 Can all the winners please send me your email address! I want to send you your winnings!!
03.01.2022 Details up soon!! Any more donations are welcome.
01.01.2022 Happy New Year everyone; this year we hope to be focusing on Tillys health and physical therapy. We start back this week with seeing the doctors and physical therapy. Next week she has an appointment with her gastrointestinal doctor- to discuss her feeding tube and what the plan of attack is for 2019. We will also be changing the go fund me over, we are moving to setting up Tillys rehabilitation fund: we are working with Queensland Health and the relevant people to see what funding is available. This year is all about making small positive steps and to share these with you! Much Love Team TIlly
01.01.2022 I will be contacting each of the winners from the raffle tonight and tomorrow to work out how to collect your winnings!! The winners are: * Broncos Jersey- Mel Lithgow... * Womens Reds Jersey- Angela McHardy * $50 Love Henry Voucher- Leanne Crossland * Le Creuset Cooking Pot- Leanne Crossland * Norwex Pack one- Julia PT * Norwex Pack two- Ellen MacFarlane * Holiday at "gingerbread cottage" - Marie Hodges * Frankie4 Voucher- Julia PT * Arbonre Gift Pack- Miss Jen (KDMCH) * Hanper- Julia PT * Beauty on LaTrobe voucher- Anna Siddans * Boot Camp vouchers 1, 2 & 3- Marie Hodges, Jane Williams and Erin Mackenzie! Well done everyone and thank you so much for your support
01.01.2022 Very random question but does anyone know of a uni student in Sydney (western Sydney uni would be fab) that is interested in some work transporting my little diver to training on occasions?Very random question but does anyone know of a uni student in Sydney (western Sydney uni would be fab) that is interested in some work transporting my little diver to training on occasions?
