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Christians Journey

Christians Journey

Personal message

Christian was diagnosed with Doose syndrome (Pronounced Dooza), a rare form of Epilepsy. At the height of seizure activity, he was suffering 50 - 60 seizures a day. He also has severe ADHD, Autism, a diminished IQ and behavioural problems. He suffers from several kinds of seizures. Generalised tonic-clonic seizures, Atonic Seizures, Absence Seizures and Myclonic Seizures. He is currently taking 22 tablets a day to keep the seizures at bay, which also have many side effects; however, he is still having seizures.

Christian has been invited to participate in a genetic study in association with Boston Children's Hospital and Harvard medical school. The genetic testing would pinpoint the potential causes and could change his treatment and seizure management going forward and hopefully improve on his quality of life as he gets older.

While we are in the States, he will also undergo a drug trial for 3 months to try lower the volume of drugs he is currently taking and to improve his quality of life.

We are trying to raise funds to contribute towards the flights for myself, Christian and my 5-year-old daughter, Lilly, and to also cover medical costs such as blood tests and visits to the doctor, who will be closely monitoring his progress while on the drug trial. As well as day to day living expenses. Fortunately, we will be staying with friends so accommodation will not be a problem.

Any contribution will be appreciated.

Update: Apologies for the delay in updating regarding our appointment on Friday. Had to have some time to get my head around things.
We met a wonderful doctor on Friday. Good news is that he recommends Christian start on the drug trial straight away. On a low dose and that will hopefully help with his sleeping and his appetite
However .... He is very concerned about Christian's regression. Doose Syndrome children do not regress.
He is worried that there could be something else going on with Christian's brain. Like a neuro degenerative disorder or disease or something. And the only way to be definitive would be to do an MRI.
So he will compile his report and all his findings and recommendations and forward that to Dr in UCSF. And hopefully we can have the MRI done there. All in all, not good news but at least he was very positive and he was very good with the boy. Very kind compassionate man and spoke very kindly to me and had a lot of patience with the little boy. I am waiting for the meds to arrive should be tomorrow or Wednesday.
It turns out i flew 32hrs with two children, with pneumonia. Ended up at a doctor myself.. not exactly what i had planned. But that is life. Today was probably my first day i felt human. More myself. Been loved and cared for by Martin Family Much love to all those who are praying for us. Will update again soon.

6th April Update: Hi everyone. Results of the MRI. . Confirmation that Christian does NOT have a neuro degenerative disease. Relief. So removed that off the list. Forwarding the MRI to Dr in San Francisco so he can have a look before we get there for our appointment on the 18th. Christian seems to be responding well to the medication. He has put on 3pounds since we have been here and is sleeping much better. Have seen a drop in seizure activity so lots of positives. Lots of questions too. But hopefully we will have more information soon. Thanks as always for the wonderful constant support, love and messages and emails. Lots of love. The Masons

Donations

  • Feb 26, 2018 - R 598.19
  • "Go well and thinking of you xx" - Letitia

  • Feb 21, 2018 - R 514.10
  • "Sterkte Christian!" - C

  • Feb 16, 2018 - R 510.00
  • "Praying for Christian!" - Let's get Together Member

  • Feb 15, 2018 - R 210.00
  • "Good luck" - Anon

  • Feb 15, 2018 - R 200.00
  • "Get well soon!" - Cobus C

  • Feb 14, 2018 - R 514.10
  • "May God protect and heal you. " - Anon

  • Feb 14, 2018 - R 5 000.00
  • "All the best with the trip and tests, we trust that everything will go well!" - Cobus and Madia Ackermann

  • Feb 14, 2018 - R 205.64
  • "Good luck" - PW

  • Feb 13, 2018 - R 2 010.00
  • "God's richest blessings on you all" - Bryan and Anita

  • Feb 12, 2018 - R 514.10
  • "Good luck and thinking of you," - Lindsay Chaplin

  • Feb 12, 2018 - R 514.10
  • ":-)" - anonymous

  • Feb 09, 2018 - R 1 000.00
  • "You are blessed!!!" - Anonymous

  • Feb 09, 2018 - R 1 028.20
  • "Good luck" - Anonymous

  • Feb 07, 2018 - R 514.10
  • "You are in our thoughts, Christian" - Jean

  • Feb 07, 2018 - R 514.10
  • "Good Luck" - Brett

  • Feb 06, 2018 - USD $ 43.37
  • "All the best Christian and Bronwyn!" - august

  • Feb 06, 2018 - USD $ 86.74
  • "Best wishes to Christian through his challenging journey. From Melbourne Australia" - Dita

  • Feb 06, 2018 - USD $ 86.74
  • "All the best Christian, sending lots of love from the UK" - Chanell F

  • Feb 06, 2018 - R 1 000.00
  • "All the best" - DEBORAH SYMMONDS

  • Feb 05, 2018 - R 514.10
  • "Blessings on you and the family xx" - Chrissi

  • Feb 05, 2018 - R 1 000.00
  • "Bless you Christian. Praying for a great result. " - Pat Davidson

  • Feb 05, 2018 - R 1 000.00
  • "On Behalf of my late wife who would have wished you strength and success on this difficult journey" - Loren Leclezio

  • Feb 05, 2018 - R 514.10
  • "Hope all goes well." - Gregg White

  • Feb 04, 2018 - R 514.10
  • "Wishing you all the best" - Laura & Gary James

  • Feb 04, 2018 - R 1 028.20
  • "Woof Woof " - Ollie

  • Feb 04, 2018 - R 308.46
  • "Good luck " - Joan

  • Feb 02, 2018 - R 257.05
  • "Best of luck Christian" - Paul

  • Feb 02, 2018 - R 514.10
  • "best of luck! xx" - Frans and Lacea

  • Feb 02, 2018 - R 257.05
  • "Best of luck!!!" - Jon-Ross Burns

  • Feb 02, 2018 - R 210.00
  • "All the Best!" - Leigh Skibbe

  • Feb 02, 2018 - R 1 542.30
  • "Stay strong Christian and all the best xxx" - Sum

  • Feb 02, 2018 - R 514.10
  • "Best wishes" - Tim Brebner

  • Jan 29, 2018 - R 514.10
  • "All the best for your trip " - Suzaan

  • Jan 29, 2018 - R 514.10
  • "Wishing you the best of luck Christian" - Dean

  • Jan 29, 2018 - R 237.54
  • "Wishing you the best of luck! " - Laiza Morgan

  • Jan 28, 2018 - USD $ 44.38
  • "You can do it Christian " - Allan Otte

  • Jan 22, 2018 - R 1 000.00
  • "Go Christian! Much love, the Buttles x" - Audrey Buttle

  • Jan 22, 2018 - USD $ 10.56
  • "Wishing you all the best on your journey of new opoortunity!" - Cindy

  • Jan 09, 2018 - R 1 028.20
  • "Always in our thoughts, wishing you all the best xxx" - Nats, Rob, Chloe, Roxanne

  • Dec 21, 2017 - R 308.46
  • "xx" - Adele van Litsenborgh

  • Dec 14, 2017 - R 205.64
  • "All the best Christian and family" - Johann de Wet

  • Dec 08, 2017 - R 100.00
  • "Praying everyday for you guys xx" - Sherene

  • Nov 03, 2017 - R 1 028.20
  • "With lot of hope and faith I wish a normal life for Christian." - Shridhar Runthala

  • Nov 01, 2017 - R 308.46
  • "Sending lots of love and best wishes xxx" - Lynne

  • Oct 30, 2017 - R 510.00
  • "Hope ,Christian is cured of his condition and spends the rest of his life like other kids" - Sriks

  • Oct 23, 2017 - R 205.64
  • "Good luck, Christian! " - Rachel Penkler

  • Oct 20, 2017 - R 205.64
  • "Hope all goes well" - Anon

  • Oct 20, 2017 - R 10 000.00
  • "All the best " - W

  • Oct 18, 2017 - R 205.64
  • "All the best" - VK

  • Oct 18, 2017 - R 205.64
  • "All the best" - DC

  • Oct 18, 2017 - R 1 028.20
  • "Anything to improve his and your quality of life!" - Jo

  • Oct 18, 2017 - USD $ 78.56
  • "Praying the trip goes well & you get the answers you need. Xx" - Caryn Hasselblad

  • Oct 17, 2017 - R 1 028.20
  • "Voorspoed!" - CN

  • Oct 16, 2017 - R 510.00
  • "Good luck Christian! " - B&B

  • Oct 16, 2017 - R 510.00
  • "With love ??" - Lisa

  • Oct 16, 2017 - R 510.00
  • "Wishing you all the best" - Anon

  • Oct 16, 2017 - R 1 010.00
  • "Bless his beautiful heart" - Jacques & Tania & kids

  • Oct 15, 2017 - R 1 028.20
  • "Good Luck!" - A nony mouse

  • Oct 15, 2017 - R 514.10
  • "Sending love and strength to you all! Xx" - The Scodellers

  • Oct 15, 2017 - R 308.46
  • "Hugs & Kisses " - A & F & A

  • Oct 15, 2017 - R 1 542.30
  • "All or love " - Derick & Florence

  • Oct 15, 2017 - USD $ 75.43
  • "Hope you raise the funds" - Anonymous

  • Oct 14, 2017 - USD $ 150.86
  • "We love you all and can’t wait to see what God has in store" - Fiona and Family

  • Oct 14, 2017 - R 1 364.02
  • "Love you!" - The Martin Family

  • Oct 14, 2017 - R 205.64
  • "ShaloM" - AntoN en Claudine

  • Oct 14, 2017 - R 1 028.20
  • "Go Christian! X" - Warren & Nikki

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Statistics

Donations to date

R 154 057.09

Fundraising target

R 140 000.00

Funds raised offline

R 96 537.00
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Christians Journey Fund

Christians Journey Fund Logo

Christian has been invited to participate in a genetic study in association with Boston Children's Hospital and Harvard medical school. The genetic testing would pinpoint the potential causes and could change his treatment and seizure management going forward and hopefully improve on his quality of life as he gets older.