Odette is now 14 months old and is doing well.
She still gets a new prosthesis every 3 weeks and this is still a difficult quest because these do not always want to fit.
In general, she is doing well. Motorly, she is well on track thanks to the additional bobath therapy.
The costs are still there. They still do not have approval for reimbursement through mutual insurance.
One chance in a few billion. That is what Odette's parents were told when the doctors treating her told them that their
newborn daughter suffers from both anophthalmia and microphthalmia. The three-month-old girl has only one eye and is
completely blind. They want to give Odette as comfortable a life as possible. But this will require a lot of money.
First, they need to look at how to help Odette's small head grow. The absence of the right eye means that crooked growth
is possible. However, the parents want to give her a symmetrical and beautiful face, and for this an eye prosthesis must be
placed at least once a month. This then ensures that growth is as normal as possible.
The health insurance fund reimburses only two prostheses a year while she needs at least 24 each year.
"We are very grateful that Odette is with us, but the line between happiness and sadness is sometimes small. We carry on, for her."
Club 15 aperitif concert
On Sunday 25 September, after two years, there was another Club 15 aperitif concert at the Kubox in Kuurne.
We were honoured that the proceeds raised from the concert were again for our Linum Charity.
What an achievement to combine such a high level of event with proceeds of over 16,000EUR! A record and that in this more difficult period.
Thank you very much Club 15! You can count on us to target the proceeds to support families.
Fiona is doing well
I find myself overwhelmed with all of the joyous things Fiona has been doing!
Which one should I start with? The fact that she is still in Remission! The fact that she has completed her treatments,
radiation and immunotherapy. The fact that all her medications are lowering. So many to choose from!
The past few months have been so special for our sweet Fiona! She is doing so great and loves to learn something new
each day.We have mastered Potty Training! Fiona also was able to have her NG tube removed and is doing amazing!
Big things in 2022!! Her blood pressure has been managed very well with the 2 medications and we are reducing one
of them every few weeks. There is so much light this year and we have God and each and every single one of you for
support. We still manage the after side effects of high-doses of chemotherapy and radiation. These medications affect
We have several hearing tests scheduled as we have learned that chemotherapy can damage hearing. Fiona is such
a warrior and will continue to light the world!
Currently, her favorite way to start and end the day is to water the flowers outside with daddy. She has created a gnome
village in the garden and we visit them and watch the butterflies and birds in our yard.
We are preparing for Fiona’s 4th Birthday and that is truly spectacular!! She decided her theme must be unicorns and
we are going to surprise her with a petting zoo! We have good things to look forward to in 2022! Thank each and every
one of you for your continued support! Your compassion and energy gives us strength!
Long live William
William, the little son of Marie and Dennis was born in March 2021 but may not live to see his third birthday.
In September 2021 they received very bad news, William appeared to have incurable Menkes syndrome.
Menkes syndrome is a very rare and serious metabolic disease in which the body cannot properly extract copper from
food, causing a shortage of copper in the body.
This deficiency causes a wide range of different symptoms such as underweight, sometimes certain external features,
epilepsy, problems with development and many more. Most children with this syndrome live 18 - 36 months.
But there is hope. In America, they have been researching Elesclemol, a drug that would ensure that copper is
transported to all the places in the body where it is needed, for years.
Since January 2022, this medicine has been tested on a Spanish boy. This treatment is succeeding and William
can also receive this treatment. Because of this treatment William has the chance to become older than 3 years
and to have a "normal" life with further development.
However, this treatment costs 100,000 euros and that is why William asks for help.
The Linum Charity has already supported but an SMS action has also been set up. All information can be found
Good news from Fiona
"Happy New Year everyone!! 2022 is going to be fantastic!
Time to update Fiona’s crew! First off I would like to start by saying Fiona is doing fantastic ❤️
We have completed 4 rounds of Immunotherapy at Nickalus Children’s Hospital in Miami. Fiona has been doing so great and responding to this treatment with very minimal side effects, we thank God for that! Her treatments are once a month for 5 days. We call it a sleepover at the hospital- she likes it better that way.
I can say that we have learned so many valuable lessons this year. Lots of laughs and lots of tears, we are happy
to enjoy another year together!
Fiona is coping so well with this new transition and we are so thankful. We currently are adapting to life at home
and learning how to adjust to daily routines. It truly is beautiful when Fiona can adapt to a new routine/ activity that
is playful and fun verses a medical activity that she is all too familiar with. She is doing great at home! She also
helps with chores- how did I get so lucky!?
Today we are starting round 5 Immunotherapy We have all the faith that Fiona will conquer this cycle too! We
thank each and every single one you who have helped us to stay positive and strong for Fiona! We love you all
and wish you a Happy New Year!
Fight for Fiona"
Olivia gets help from our Linum Charity
"Thank you so much for your kind generosity, your donation will make a difference towards Olivia being able to walk.
Zip-Clip will be raising money via a number of different events in spring 2022 and we hope to rais £20K towards Olivia's operation.
She has sent a video thanking you all. I will email it to you. Once again thank you so much."
Olivia is aged 5 from Telford in Shopshire. She was born prematurely at 28 weeks in May 2016 weighing 3lb 2oz.
She was in hospital for just over 10 weeks and had to battle various infections such as sepsis, necrotizing enterocolitis (nec),
chest infections and more.
In December 2016 Olivia had an MRI scan and was later diagnosed with bilateral spastic cerebral palsy.
Olivia suffers with severe muscle tightness in her lower body and as a result is in constant pain and discomfort.
Olivia is now 5 years old and has been put forward to have life changing surgery called selective dorsal rhizotomy (SDR)
which will help reduce tightness in her legs drastically and will help her mobility in the future.
She will also need a further 2 years of intense physiotherapy and any further specialist equipment that will help her reach
her goal of one day walking.
Unfortunately, the surgery and intense physiotherapy is not funded by the NHS.
Any help would be greatly appreciated.
Fiona is doing a little better
We received good news about Fiona
Happy Easter Everyone. So as of now we are still at the hospital but in a much better place. Fiona has been breathing on her own for
over a week now and the doctors say her lungs are functioning as they should. We now face the battle of weening the medications
used to sedate and ease the pain. It is a long, slow process. We will be at least another month in the PICU.
Fiona is so strong, she is playing with toys and coloring. She loves watching her favorite movies(Currently "Finding Dory" and
"The Good Dinosaur") and having mommy and daddy read stories to her. It has been a hard couple of months but we hope to be
home by Fiona's 3rd Birthday.
To everyone who has donated, I cannot thank you all enough. Your support does not go unnoticed and we are extremely grateful
to you all.
Happiness for LUCAS
The modified car for Lucas has finally arrived.
We don’t need to tell you how happy the whole family is.
A word of thanks from Guillaume Blaecke, dad of Lucas:
Once again thank you very much for the donation by the Linum Charity. Our car has finally arrived after various complications.
There are no words to describe this happiness to our family. Now we are able to schedule trips all together.
On Thursday 28 February 2019 ROTARY KORTRIJK LEIE handed a cheque of €1,500 to our charity.
This young service club from Kortrijk consists of about twenty managing ladies and gentlemen, whom fully support
the LINUM Charity and its projects.
Club 15 gives the Linum Charity a cheque of 16.670 EUR