Seven-month-old Madalayna Ducharme is receivingthe stem celltransplant she urgently needs to save her life, from a donor found in herWindsor home her two-year-old brother Henrik.

But her mother Tamara cautioned Friday that the hardest days start today as specialistsat Torontos Sick Kids hospital closely monitor for the next several weeks how Madalayna responds to her brothers stem cells, needed to halt the terrible effects of malignant infantile osteopetrosis.

Theone-in-200,000 genetic disorder causes bones toget thicker and more dense. She cant lift her head because its too heavy. One of the most devastatingeffects vision loss caused by thickening bones compressing nerves has already happened since her January diagnosis.

People dont get how difficult this still is, Tamara said during a phone interview Friday from Sick Kids. Once the match was found (last week) everyone was so excited. But then there was eight days of chemo, to kill off Madalaynas own stem cells and make room for those from her brother. The chemo was tough on Madalayna, Tamara said.

And that isnt even the most difficult part. We keep being told its going to get a lot harder before it gets better.

She said doctors will monitor her for signs of rejection for the next 14-27 days in Toronto. Theres a risk of graft versus host disease, which can happen if Henriks donated bone marrow thinks Madalaynas body is foreign and attacks her.

When Tamarawas interviewed on Friday, she and husband Charles were waiting while Henrik was donating his bone marrow a 3-hour procedure called harvesting. Madalayna was on Tamaras lap, waiting for the procedure that involves transfusing the bone marrow into her system, much like a blood transfusion.

The Ducharme family at their home in Windsors Riverside area on Jan. 18, 2017. From left: Henrik, Tamara, Charles, and warrior princess Madalayna. Nick Brancaccio / Windsor Star

Because hes only two, Henrik only understands that hes helping his sister, Tamara said.He was very willing, she said, because he knows she is very sick.

The family went public in January to plead for people to get swabbed tested to see it theyre a match and to register on the international bone marrow registry. About 1,500 volunteered, said Tamara.

Its phenomenal, she said of the response. Its very uplifting, it makes you feel really great that people are behind us. She said social media posts about Madalaynas progressare followed by 7,000-15,000 people.

Shes got a lot of prayers and thoughts behind her, so shes going to be OK.

Tamara said Madalaynas eyes have been affected by the disease, but doctors arent yet 100 per cent sure if shes entirely lost her eyesight a permanent effect from the disease.

Madalayna appeared perfectly healthy when she was born, but at two months, theirfamily doctor noticed herfontanel the soft spot in a babys skull was enlarged. It was the start of a long list of symptoms such as spitting up, seizures, spots on the liver and abnormal findings from blood work, ultrasounds and other tests. The definitive diagnosis came in January.

When the Ducharmes made their public appeal for people to get swabbed, the situation was an emergency due to the possible arrival of terrible complications, including lost eyesight and hearing.

Windsor is such a great community, as soon as you put a call out, people are willing to help, theyre always there in abundance, said Joanne Bedard, whose Katelyn Bendard Bone Marrow Associationorganizedlocal bone marrow registrations in Madalaynas name.

About 1,300 people registered with CanadasOne Matchstem cell and marrow registry, not including other donors who were swabbed at regular Canadian Blood Services blood donor clinics or who submitted their swab sample through the mail.

The fact we had that many people who joined the registry, it just offers so much more hope to the other over 800 Canadians who are waiting for a (stem cell) transplant, said Bedard, whose daughterKatelyn died of leukemia in 2005 when she was three, aftera bone marrow donor could not be found.

When they learned last week that Henrik was a match, doctors were initially hesitant to use him because of concerns his genetic makeup was too close to Madalaynas and could therefore share some of the diseases traits. But they ultimately decided that Henrik was the best option.

Madalayna Ducharme at her family home in Windsors Riverside area on Jan. 18, 2017. The baby warrior princess suffers from the rare disorder of malignant infantile osteopetrosis. Nick Brancaccio / Windsor Star

Friday was Day Zero for Madalayna, and the medical experts will start counting upwards from there as Henriks stem cells start to graft into her system.

Thereare a lot of things that can happen from Day Zero on up until she has accepted this bone marrow, her mother said. So were actually going to be in the roughest days starting today.

A benefit to help the family is planned for April 1 at Parkwood Gospel Temple, 3005 Temple Dr., from 4 p.m. to 8 p.m. Call 226-348-0388 for information about tickets. You can also donate to an account set up at Libro Credit Union. Go to any location and make a deposit to the Warrior Princess account. You can also make an e-transfer towarriorprincesslayna@gmail.com with the password Layna.

bcross@postmedia.com

twitter.com/winstarcross

See the original post:
Prayers, hopes for Madalayna, as brother donates life-saving stem ... - Windsor Star