Loving Hudson Mimlitsch is not hard to do.

The seven-year-old is a cute little boy with a mop of fuzzy brown hair that caresses his pretty brown eyes and soft, pale cheeks. He loves SpongeBob, Bob the Builder, and his little toy cars. Wearing his bright yellow SpongeBob pajamas, he sits in the middle of the living room rug, playing with his toy cars while listening to a children’s show on television.

At first glance, he appears much like any other normal little boy.

But Hudson is far from normal. He suffers from neuroaxonal dystrophy, a fatal degenerative neurological disorder for which there is no treatment and no cure.

In less than two years, parents Brittany and Jerry Mimlitsch have seen their once active little boy regress to age one, both mentally and in his physical abilities. Hudson has lost much of his eyesight and his ability to walk. He can’t swallow correctly anymore and is now fed through a tube inserted into his stomach. He suffers seizures.

After once running and playing on a soccer field with his tiny team mates, Hudson now toddles when both hands are held, much like a little one learning to walk. He crawls across the floor or is ferried on wheels. He’s back in diapers, has started sucking his thumb, and is fed baby formula through his feeding tube.

“Each challenge is harder and harder, but you get used to it,” said Jerry, 31, in his Winfall home. “Dealing with each challenge is tough, but it eventually becomes the norm as we go down this road.”

With his sweet, small voice, Hudson tries to mimic words he hears, and will insert memorized words into songs sung to him by his mother. With nearly a full set of teeth, he chews on anything he can get his hands on.

“He thinks he is teething,” said Brittany while holding her son as he undergoes a feeding. “It’s almost like having a 60-pound infant. But, I am blessed to have a son who wants to climb in my lap and let me hold him close as he sucks his thumb.”

The disease will continue to slowly deteriorate his nervous and muscular systems even more, taking away his functions one by one. Barring anything short of a miracle, Hudson’s prognosis is not good. Doctors say children with this genetic disease don’t live past the age of 7-10.

“Knowing that information, we had a really tough time when he turned seven. His disease won’t kill him, but complications, like pneumonia from aspirating his food or his organs shutting down, will,” said Brittany, fighting back tears. “We are trying to keep him active as long as we can. With the time we have left with him, we want to keep him happy. We’d rather he die happy than live miserably.”

Such brave and strong words from a 26-year-old mother. But both Jerry and Brittany will tell you they are not strong - they are simply parents doing what is needed for their precious child. They rely heavily on the support of loving family, helpful friends, and their faith in God.

“There is no coping with this. We are not supposed to bury our child,” said Brittany. “It’s not fair. It sucks! But who best can comfort their child in death than his parents? I don’t get to be a soccer mom with him anymore. I won’t get to dance at his wedding. But I get to hold his hand as he sees Jesus. He is such a blessing to me.”

Disease history

Hudson cried almost the entire first year of his life. His parents felt something was wrong, but didn’t know what. He experienced a number of ear infections and even acid reflux. After receiving several vaccinations at the age of 20 months, he stopped talking for two years. He was diagnosed with a form of autism, developmentally delayed, numerous forms of epilepsy.

Then in March 2010, Hudson suffered a grand mal seizure that made him unresponsive for two hours. He was shipped to the Children’s Hospital of the Kings Daughters in Norfolk where he was tested with an MRI and eventually referred to specialists at Johns Hopkins Hospital.

After a battery of tests in the Baltimore hospital, doctors told Brittany and Jerry the grave news that Hudson was born with an extremely rare genetic disease. Either one or both of his parents carry the gene, doctors said. Hudson, however, does not.

In fact, the original diagnosis of neuroaxonal dystrophy was not confirmed until last week when a recent MRI at CHKD showed that Hudson’s cerebrum had decreased in size.

Hudson’s latest hospital stay showed he has gone “downhill” drastically in the last 6-9 months. While riding in the vehicle with his mother two weeks ago, Hudson suffered three seizures and stopped breathing. He was taken to a local hospital and then transferred to CHKD where doctors told his parents they should consider preparing a living will and signing a do not resuscitate order for young Hudson in the event he stops breathing.

“I knew the seizures he suffered that night were different from any he had suffered in the past, but I didn’t expect that,” said Brittany. “I expected them to just change his medications and send him home. They said my baby’s dying...I can’t be OK with that.”

Family changes

Illness has a way of changing things, not only for the patient, but for family members as well.

Brittany always wanted to be a nurse. She attended classes and was working towards that dream when Hudson first became sick. She gave up her goal of becoming a nurse to care for her sick son. Instead of taking classes and learning how to care for patients, Brittany now learns by taking care of Hudson.

“Sometimes I’m overwhelmed by so much information, so much paperwork, so much to do,” she admitted.

Jerry works for her father in the appliance repair business. He’s learning as well...like how to hook up a feeding tube.

They have one other child, a daughter age four and a half. They try desperately to keep life as normal as possible for their daughter, but it has been hard. She is slated to be tested for the disease-causing gene next month.

Facing issues that began long before Hudson became sick, the couple has divorced over the past year or so. They share joint custody of the children and they both work together to make sure each parent is there for the children as much as possible.

When they brought Hudson home from the hospital Jan. 30, the family agreed to stay in Jerry’s home in order to give both parents as much time as possible with Hudson.

In addition to the emotional impact of dealing with a gravely ill child, the couple also faces financial strains. While Hudson’s Medicaid status will pay his medical bills, both parents have missed time from work in order to be at Hudson’s bedside. The cost of traveling to hospitals and doctors’ appointments has taken a toll on both.

Just paying the normal bills is a strain.

Brittany was working at a restaurant to support her children and herself, and had just taken a new job when Hudson was rushed to the hospital two weeks ago.

So far, employers have been understanding and supportive. Employees at both restaurants have provided meals to the family and helped in various other ways.

Even with the changes, loving Hudson is evident is every aspect of his parents’ lives. It is incredibly difficult, yet an unimaginable labor of love, in helping two close siblings deal with the impending reality.

“What do you tell a four and a half-year-old little sister who won’t go to bed at night without her big brother?” wondered Brittany. “She tucks her big brother into the bed every night and tells him ‘It’s OK Buddy,’ Sometimes it seems like she is stronger than all of us put together.”

Strength in faith

Brittany and Jerry both admit they have good days and they have bad days — as does Hudson. But the foundation that runs underneath that river of emotions that changes course daily is a foundation of faith — their belief in God and in prayer.

Brittany says they rejoice in loving Hudson and pray for many more days to do just that.

Her advice to parents of sick children or those facing fatal illnesses?

“Just know you don’t have to stay strong all the time,” she said. “It’s OK to take a break. Don’t feel guilty, but don’t use the difficulties as an excuse either. Surround yourself with brothers and sisters who believe, or find a support group. Most of all, don’t be afraid to tell God how you feel. Keep that conversation going.”

Even with the emotional pain and sadness that go hand in hand with illness, loving Hudson is easy.

“This disease has taken so much from him, but it has not stolen his personality,” Brittany added. “He is a joy to be around.”