Hands Helping Hudson

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Lori Contant, Michaele Bialon, Hudson, and Georgia Sarro. — Photos by Sara Hall

At just 3-years-old, Hudson is playful, generous and a little stubborn.

He attends preschool, Krav Maga classes and will be taking swimming lessons this summer. He’s smart and tall, and loves numbers.

But unlike most other toddlers his age, he also has a brain tumor and has to go to chemotherapy once a week.

It all started when Hudson was just a few weeks old and his mother, Michaele Bialon, noticed a few too many birthmarks. A few weeks and several doctor visits later, the family learned that Hudson had neurofibromatosis (NF1).

During the past three years, they have dealt with delays in motor and speech skills, among other issues. Luckily, Bialon said, he does not have a learning disability. He’s been doing well overall.

But last spring, during a routine MRI, things changed. Doctors found a tumor in his brain that spanned from his optic nerve to his hypothalamus.

Hudson plays with some of his favorite toys at home recently.

He had to start chemotherapy in August, and has to continue going once a week for 18 months. He has to have an MRI every three months as well.

The mother and son soon moved out of their San Diego home and in with Bialon’s parents, Joe and Georgia Sarro, in Newport Beach for support and easier access to the Children’s Hospital of Los Angeles.

With the help of family friend Lori Contant, they formed Hands Helping Hudson, a non-profit created to encourage love, support, strength and positive energy for Hudson and his family.

Now the family is reaching out to the community for support. The Newport Beach Tennis Club will be hosting the First Annual Hands Helping Hudson Fundraising Event.

The gala will include food, entertainment and a live auction, with items like a week stay in Mammoth, two condo stays in Hawaii, several pieces of art – including one piece painted live by artists in body suits, kids’ acting classes, harbor cruise, and more.

A portion of the funds raised at the event will also go toward the Children’s Tumor Foundation.

The event, produced by Contant, will be held on May 18 at 6 p.m. at the tennis club. Organizers are expecting about 200 guests.

“It’s amazing,” that so many people have come together for Hudson and their family, Bialon said.

But Hudson’s amazing story really starts before the gala and before his diagnosis as an infant, because NF1 is a genetic disorder and Bialon and her partner used a sperm donor to conceive Hudson.

The couple used California CryoBank (CCB) in Los Angeles and picked a 100 percent Danish donor, not knowing the sperm was actually imported from Nordic Cryobank in Denmark.

They immediately alerted the cryobank about the birth marks and asked if any of Hudson’s half-siblings had the disorder. The bank returned with confirmation that at least one other half-sibling of his has NF1.

After a slow response by the cryobank, several other children were discovered to have neurofibromatosis as well.

The family has now found out that Hudson has at least six half-siblings that have the genetic disorder, that Bialon can confirm and has had contact with. Other reports have the number as high as nine kids.

“I’m sure there are other cases,” Bialon added.

On top of the six to nine kids with NF1, the donor is thought to have fathered 43 other half-siblings, way over Denmark’s legal limit.

The case has caused Denmark to tighten it’s sperm donor laws and change the policies on the issue.

After testing the donor, it turned out he was a “mosaic” carrier, Bialon said, meaning he only had the disorder in some of his cells. So the donor may have not known, she explained, because he may have not had any symptoms.

“But what we’re finding out (now) is that he actually does have some evidence of the disorder,” Bialon said.

The initial cryobank in Denmark did not do a thorough exam, Bialon claimed, and they didn’t report everything they found, like numerous birthmarks and white pigment spots.

Hudson playing at home in Newport Beach.

Apparently, according to the cryobank, only one other set of parents reported the NF1 signs back to the bank and that was a week after Bialon had reported Hudson.

Bialon argued that it’s hard to believe that the cryobank didn’t receive any reports from other parents.

“The huge part that is unbelievable, literally, is that the donor had been donating for five years prior us to reporting anything,” and nothing ever came up, she said.

“My grandson is innocent,” Sarro said. “He’s just a beautiful baby and now he has to live with this for the rest of his life… That’s not fair.”

It’s one of the most common genetic disorders out there, Bialon said.

“(My hope is) a cure. For Hudson, for NF1, for his siblings, for everybody,” Bialon said, which doesn’t seem unreasonable, she added. Researchers hope to have a cure within 10 years, Bialon said, and at this point, awareness is key.

Although once a week Hudson has to have chemotherapy, there are fun days too, his mother said. He even “plays” tennis with his Grandpa Joe.

Bialon’s goal is for Hudson to do something fun every day.

“Whatever we do, we do for Hudson,” Sarro said. “All our arms are around Hudson.”

For more information or to order tickets to the event, visit handshelpinghudson.com, or visit the organization’s facebook page.

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