Subscriber login

Welcome to our new site. You will need to reset your password if this is your first time logging in. Please click here to reset your password.
The locally owned voice of the capital region
School Closings
Academy at Rensselaer Education Ctr: Delayed 2 HrsAcademy of the Holy Names: Delayed 2 HrsAchievements & Kids Express Mplwood: Delayed 2 Hrs, no before careAchievements St Kateri Tekakwitha: Delayed 2 HrsAchievements and Kids Express TBGC: Delayed 2 HrsAdirondack Enrichment: Delayed Until 12:30pAesthetic Science Institute: Delayed 2 Hrs, Classes begin at 11 amAlbany Leadership Charter High: Delayed 2 HrsAmbleside School: ClosedAmsterdam City SD: Delayed 2 Hrs, No AM Pre-K, No AM BOCES, No BreakfastAmsterdam Head Start: Delayed 2 Hrs, Staff ReportAn Nur Islamic School: Delayed 2 HrsAndes CSD: Delayed 2 HrsArgyle CSD: Delayed 2 HrsArkville Head Start: ClosedAugustine Classical Academy: ClosedAustin's School of Spa Technology: Delayed 2 Hrs, Staff ReportAverill Park CSD: Delayed 2 Hrs, No AM BOCESAverill Park Pre School: Delayed 3 Hrs, No AM Pre-School, No AM PgmBallston Spa CSD: Delayed 2 HrsBattenkill Community Services: Closed, Hockey game still on, will call with timesBennington County Meals: Open, Home delivery delayed Cafe openBerkshire Country Day School: Delayed 2 HrsBerlin CSD: Delayed 2 HrsBerne-Knox-Westerlo CSD: Closed, Offices are closed.Best Fitness (Schenectady): Delayed, No Morning Classes, Club Open No morning classes classes resume 430pBethlehem CSD: Delayed 2 Hrs, No AM BOCESBethlehem Children's School: Delayed 2 HrsBishop Maginn HS: Delayed 2 HrsBluebirds' Nest Preschool: ClosedBroadalbin-Perth CSD: Delayed 2 Hrs, No AM Pre-K, No AM BOCES, No Breakfast, No PTECH, AgTECH, TEC-SMARTBrown School: Delayed 2 Hrs, No Morning PLUS ProgramBrunswick (Brittonkill) CSD: Delayed 2 HrsBrunswick Children's Academy: Delayed 2 HrsBurnt Hills-Ballston Lake CSD: Delayed 2 Hrs, No AM BOCES, 2-hour delay (final)Butterfly Dreams Daycare: Delayed 2 Hrs, Opening at 9:30 amCOARC Adult Transportation: Delayed 2 HrsCairo-Durham CSD: ClosedCalvary Preschool: ClosedCanajoharie CSD: Closed, No PM ActivitiesCapital Reg Career & Tech (Albany): Delayed 2 Hrs, No AM BOCESCatholic Central HS: Delayed 2 HrsCatholic Schools Office: Delayed 2 Hrs, Principals Meeting at 10:30Catskill CSD: Delayed 2 Hrs, No AM Pre-KCatskill Mt. Christian Academy: ClosedCenter For Early Learning: ClosedChatham CSD: Delayed 2 HrsChatham Kids Club: Delayed 2 Hrs, Open at 8:30Childhood Friends Inc.: Delayed, We will open at 9:00am for All children today!Christ Our Light Catholic Church: Delayed 2 Hrs, Office opening & Adoration delayed 2 hrs. Morning services cancelledChrist the King Early Childhood Ctr: Delayed 2 Hrs, All programs open @ 9:30 AMChristian Brothers Academy: ClosedCircle Of Friends (Delmar): Delayed 2 Hrs, Wrap around delayed 2 hoursCircle of Friends (Ravena): Delayed 2 Hrs, 2.5 hour class is closed 5 hour classes delayedClifton Park Nursery School: Delayed 1 HrCobleskill Campus Child Care Center: Delayed 2 Hrs, Open at 9AMCobleskill-Richmondville CSD: Closed, Offices Open at 9 a.m.Cohoes City SD: Delayed 2 HrsColonie Youth Centers: Open, No BSPColumbia Christian Academy: Delayed 2 HrsCommunity Library Cobleskill, NY: ClosedCooperstown CSD: Closed, No AM BOCES, School is now CLOSED.Corinth CSD: Delayed 2 Hrs, No BreakfastCoxsackie-Athens CSD: Delayed 2 Hrs, No AM BOCES, No BreakfastCrossFit Schenectady: Delayed, No Morning ClassesCrossroads Center for Children: Delayed 2 Hrs, Day Care open @ 9:00Crown Point CSD: Delayed 2 HrsDay Nursery (S Glens Falls): Delayed Until 12:35pDelaware Academy CSD at Delhi: Delayed 2 HrsDoane Stuart School: Delayed 2 HrsDolgeville CSD: Closed, No AM BOCES, No BreakfastDoors of Hope: Delayed 1 HrDuanesburg CSD: ClosedEarly Childhood Learning Ctr: ClosedEarly Childhood Education Center: Delayed 2 HrsEarly Childhood Education Ctr-Troy: Delayed 2 HrsEast Greenbush CSD: Delayed 2 HrsEco Baby Daycare & Preschool: Delayed 2 HrsEdinburg Common SD: Delayed 2 HrsExecutive Woods Childcare: Delayed 2 HrsFaith Bible Academy: Delayed 2 HrsFirst Friends Nursery School: Delayed, No AM Program, Enrichment program begins at 1130amFonda-Fultonville CSD: ClosedFoothills United Methodist Church: Closed, Building, Vision and Mission meeting cancelled for Wednesday 1/18Fort Plain CSD: Closed, Elem recognition breakfast moved to ThursdayFranklin County Technical SD: Delayed 2 HrsFulmont St Johnsville Head Start: Delayed 2 Hrs, Staff ReportFulton County Office for Aging: Open, No Transportation, No Social Adult Day Care No Home Delivered Meals Meal Sites ClosedFulton-Montgomery CC: Delayed 2 Hrs, Campus will open at 10 am.Gabriel Abbott Memorial School: Delayed 2 Hrs, No morning daycareGalway CSD: Delayed 2 HrsGeorge Washington School: Delayed 2 HrsGermantown CSD: Delayed 2 HrsGilboa-Conesville CSD: ClosedGlens Falls City SD: Delayed 2 Hrs, No AM Pre-K, No AM BOCESGlens Falls Common SD: Delayed 2 Hrs, No BreakfastGlens Falls Head Start Center: Delayed 2 HrsGloversville City SD: Delayed 2 HrsGood Ground Christian School: ClosedGrapeville Christian School: ClosedGreen Island UFSD: Delayed 2 Hrs, No BreakfastGreen Tech High Charter School: Delayed 2 HrsGreenberg Child Care Center: Delayed Until 9:30aGreenbush Child Caring: Open, No AM ProgramGreene County Nutrition Program: Closed, Athens, Catskill, Coxsackie Congregates & Homebound ClosedGreene County YMCA: Open, No Morning ClassesGreenfield Public Schools: Delayed 2 Hrs, No AM Pre-KGreenville CSD: ClosedGreenwich CSD: Delayed 2 Hrs, No AM BOCESGuilderland CSD: Delayed 2 Hrs, No AM BOCESHFM BOCES Adult Literacy: Delayed, ALZ opens @ 10am GLZ opens @ 10amHFM Career & Tech Center: Delayed 2 HrsHadley-Luzerne CSD: Delayed 2 Hrs, No AM Pre-K, No AM BOCES, No BreakfastHansel & Gretel Nursery School: ClosedHappy Kids Day Care Center: Delayed 2 HrsHawthorne Valley School: Delayed 2 HrsHebrew Academy - Capital District: Delayed 2 HrsHelderberg Christian School: ClosedHelping Hands Pre-School: Delayed, No Morning ClassesHoly Spirit School (East G'Bush): Delayed 2 HrsHometown Health Center: Delayed 2 HrsHoosick Falls CSD: Delayed 2 HrsHope 7 Community Center: Open, 9am-6pm, Reg. After School Food Pantry Open9:30a-11:45Hudson City SD: Delayed 2 Hrs, No AM Pre-K, No AM BOCES, No Breakfast, No tutoring centerHunter-Tannersville CSD: ClosedIchabod Crane (Kinderhook) CSD: Delayed 2 HrsImmaculate Conception (Glenville): Open, 9:00 am mass cancelledIndian Lake CSD: Delayed 2 Hrs, No AM Pre-K, No BreakfastInlet Common SD: Delayed 2 HrsJefferson CSD: ClosedJohnstown City SD: Delayed 2 Hrs, No AM Pre-K, No AM BOCESJubilee Child Day Care Center: Delayed 2 HrsKid Kampus: Delayed 2 Hrs, Opening at 8:30AMKidsFirst Childcare Center: Delayed 2 HrsKim's Kids Daycare: Delayed 2 Hrs, No BreakfastKingsbury Seventh-day Adventist Sch: Delayed 2 HrsKingston City SD: Delayed 2 Hrs, No AM BOCES, Kingston SD is on a 2 hr delay no AM BOCESLa Salle Institute (Troy): Delayed 2 HrsLakeside Nursery School: Delayed, No AM Pre-SchoolLansingburgh CSD: Delayed 2 Hrs, No Breakfast, Lansingburgh CSD is operating on a 2 hour delayLatham Christian Academy: Delayed 2 Hrs, No AM KLearning To Know Educational Center: Delayed 1-1/2 HrsLexington Center Fulton Co ARC: Open, No TransportationLiberty Ent/ Montgomery Co. ARC: Delayed 2 HrsLife Kids Before/ After School: Open, No AM ProgramLifeSong Inc (Saratoga): Delayed 1 HrLifeSong Inc (Schenectady): Delayed 1 HrLifeSong Inc. (Albany): Delayed 1 HrLifeSong Inc. (Rensselaer): Delayed 1 HrLil' Lambs Christian Daycare Inc.: Delayed 2 HrsLit'l Steps Pre-School: Closed, No AM Pre-KLittle Feet Daycare Center: Delayed 2 HrsLittle Tot Nursery School: Closed, No AM Pre-KLiving Res DCOP (Albany): Delayed 1 HrLiving Res DCOP (Rensselaer): Delayed 1 HrLiving Res DCOP (Saratoga): Delayed 1 HrLiving Res DCOP (Schenectady): Delayed 1 HrLong Lake CSD: Delayed 2 Hrs, No AM Pre-K, No AM BOCES, No BreakfastLoudonville Christian School: Delayed 2 HrsMalta Montessori School: Delayed 2 Hrs, No Toddler Class, No Toddler ClassMargaretville CSD: ClosedMarybeth's School Of Driving: ClosedMayfield CSD: Delayed 2 Hrs, No AM Pre-K, No AM BOCES, No BreakfastMechanicville City SD: Delayed 2 Hrs, No BreakfastMekeel Christian Academy: Delayed 2 Hrs, No AM Pre-SchoolMenands UFSD: Delayed 2 Hrs, No BreakfastMiddleburgh CSD: ClosedMillbrook CSD: Delayed 2 HrsMohawk Trail Regional SD: Delayed 2 HrsMohonasen CSD: Delayed 2 Hrs, No AM BOCESMontessori School (Schenectady): Delayed, No AM Program, opens at noon, School will open at noon for PM programming.Montgomery County Office for Aging: Delayed 2 Hrs, Advisory Council cancelledMorning Star Learning Center: Delayed 2 Hrs, stay tuned, be safeMother Teresa Academy: Delayed 2 Hrs, No AM Pgm, No am nursery program, School opens at 9:45amMountain Road School: Delayed 2 Hrs, No Before School Care.Mt Moriah Academy: Delayed 2 HrsMyers Education Center: Delayed 2 Hrs, 12 month offices 2 hour delayN. Greenbush Little Red School: Delayed 2 HrsNew Lebanon CSD: Delayed 2 HrsNew Paltz CSD: Delayed 2 HrsNewmeadow at Malta: Delayed 2 HrsNewmeadow at Queensbury: Delayed 2 HrsNiskayuna CSD: Delayed 2 HrsNorth Colonie CSD: Delayed 2 HrsNorthville CSD: Delayed 2 Hrs, No AM Pre-K, No AM BOCES, No BreakfastNotre Dame-Bishop Gibbons: Delayed 2 HrsO.K. Kids, Inc.: Delayed 2 HrsOak Hill School: Delayed 2 HrsOhav Shalom Nursery School: Delayed, No AM Program, No am care for Ohav Shalom school starts at 930 staff report 900 amOnteora CSD: Closed, No AM BOCESOppenheim-Ephratah-St Johnsville SD: ClosedOur Lady Queen of Peace (Rotterdam): Open, Faith Formation classes cancelled dut to closing of Schalmont SchoolsOur Lady of Victory Early Childhood: Delayed 2 Hrs, No AM Pre-KOur Savior's Lutheran School: Delayed 2 Hrs, No AM K, No AM Pre-SchoolOur World Montessori: Delayed 2 Hrs, Open at 10:45 a.m.Owen D. Young CSD: Closed, No AM BOCESPark Avenue Nursery School: ClosedParsons Early Head Start Day Care: Delayed 2 Hrs, Staff report at 9:00 AMParsons Early Learning Center: Delayed 2 Hrs, Staff report at 9:00 AMPerth Bible Christian Academy: Delayed 2 HrsPine Plains CSD: Delayed 2 Hrs, No AM BOCESPineview Comm Church Pre-School: Delayed 1 Hr, open at 8:30Princetown Evangelical Presbyterian: Closed, Potluck & Prayer cancelled RockLife cancelledProspect Center: Delayed 2 HrsPumpkin Patch (Albany): Delayed 2 HrsQueensbury UFSD: Delayed 2 Hrs, No AM BOCESQuestar III BOCES - Sarah's Sisters: Delayed 2 HrsQuestar III Catskill Academy: Delayed 2 HrsQuestar III Columbia-Green Ed Ctr: Delayed, No AM BOCES, 2 HR DelayQuestar III Rensselaer Academy: Delayed 2 HrsQuestar III Rensselaer Edu Ctr: Delayed 2 Hrs, Q3 New Vision is closedQuestar III Sackett Educational Ctr: Delayed 2 HrsRavena-Coeymans-Selkirk CSD: Delayed 2 Hrs, No AM Pre-K, No AM BOCESRed Hook CSD: Delayed 2 HrsRensselaer City SD: Delayed 2 HrsRhinebeck CSD: Delayed 2 HrsRiverRun Community Montessori: ClosedRoots and Wings Montessori: Delayed 2 Hrs, No before care. Open 9:30Rosa Venerini Early Childhood Cente: Delayed 2 Hrs, No AM Pgm, No am classes or beforecare School opens at 11amRoxbury CSD: Closed, No AM Pre-KSacred Heart School (Troy): Delayed 2 Hrs, TSL will open at 9:00amSalem CSD: Delayed 2 Hrs, No AM Pre-K, No AM BOCES, No BreakfastSaratoga Academy Arts & Science: Delayed 2 HrsSaratoga Bridges: Delayed 1 HrSaratoga Central Catholic HS: Delayed 2 HrsSaratoga County Senior Meals: ClosedSaratoga Independent School: Delayed 2 Hrs, No AM Pre-K, No Before CareSaratoga Springs City SD: Delayed 2 HrsSaugerties CSD: Delayed 2 HrsSchalmont CSD: Closed, Level 1 ClosureSchenectady City SD: Delayed 2 Hrs, No AM Pre-KSchenectady Jewish CC Day Care: Delayed, Opening at 8:30 amSchenevus CSD: ClosedSchodack CSD: Delayed 2 HrsSchoharie CSD: ClosedSchoharie Career and Technical Scho: ClosedSchoharie County ARC: Open, Buses on Snow Routes, Staff report regular time Public bus aides report regular timeSchoharie County Com. Action Prg.: ClosedSchoharie Cty Child Dvp Cobleskill: Closed, No AM Pre-K, No AM Head Start, HS & EHS closedSchoharie Cty HeadStart (Schoharie): Closed, HS & EHS closedSchool's Out, Inc.: Open, No AM ProgramSchuylerville CSD: Delayed 2 Hrs, No AM BOCES, No BreakfastScotia-Glenville CSD: Delayed 2 HrsSharon Springs CSD: ClosedShenendehowa CSD: Delayed 2 Hrs, No AM K, No AM BOCESShooting Stars Nursery & After Sch.: Delayed 2 Hrs, No AM Pre-School, Will open at 9amSkidmore Early Childhood Center: Delayed, No AM Pre-SchoolSouth Colonie CSD: Delayed 2 Hrs, No AM Pre-K, No AM BOCESSouth Glens Falls CSD: Delayed 2 Hrs, No AM Pre-K, No AM BOCESSouth Kortright CSD: Open, No PM ActivitiesSouthern Adirondack Edu Ctr: Delayed 2 Hrs, 12 month offices 2 hour delaySouthern Berkshire Regional SD: ClosedSpa Christian School: Delayed 2 Hrs, No AM K, No AM Pre-KSpotted Zebra Learning Center: Delayed 2 Hrs, SZ opens at 9:30 Program begins at 10:30 K Program begins at 11:00St Ambrose School: Delayed 2 Hrs, No AM PgmSt Anne Institute: Delayed 1-1/2 Hrs, Staff Report, No Trans, No school for day service StudentsSt Clement's Regional Catholic Sch: Delayed 2 Hrs, No AM Pre-K, No AM Pre-SchoolSt Edward's Church: Delayed 2 Hrs, No Mass and morning activitiesSt George's School: Delayed 2 Hrs, No AM Pre-School, AEP will begin at 11 amSt Gregory School: ClosedSt Jude the Apostle School: Delayed 2 HrsSt Kateri Tekakwitha School: Delayed 2 Hrs, No AM Pgm, No BreakfastSt Madeleine Sophie Pre-School: Delayed 2 HrsSt Madeleine Sophie School: Delayed 2 HrsSt Mary's Academy (Hoosick Falls): Delayed 2 HrsSt Mary's Church (Crescent): Delayed, No morning MassSt Mary's Institute ES (Amsterdam): Delayed 2 HrsSt Mary's School (Ballston Spa): Delayed 2 Hrs, No AM Pre-School, Before Care open at 8:00 amSt Mary's School (Waterford): Delayed 2 Hrs, No AM Pre-KSt Mary's-St Alphonsus Rgnl Cath: Delayed 2 Hrs, No Pre-K No AM Camp KerrySt Mary's/St Alphonsus Noah's Ark: Delayed 2 Hrs, Open at 9:45St Paul's Childhood Center: Open, No AM Pre-K, Part-day room closed only. Extended-day rooms open.St Pius X School: Delayed 2 Hrs, No AM Pre-KSt Stephen's Pre-K Acad (Delmar): Closed, No preschool today. After school enrichments are on until further notice.St Thomas the Apostle School: Delayed 2 Hrs, No AM Pre-KStepping Stone Pre & DCC (Albany): Delayed 2 HrsStillwater CSD: Delayed 2 HrsStory Place Preschool: Delayed, Open at 10, before care closedStorybook Academy: ClosedSullivan BOCES: Closed, Offices will open at 10 amSunshine Kids Corner: Delayed 2 Hrs, Opening at 9AMSusan Odell Taylor School: Delayed 2 Hrs, No coffee hourTLC Christian Day Care: Delayed 2 Hrs, No BreakfastTaconic Hills CSD: Delayed 2 HrsTech Valley High School: Closed, Staff report at 10 AM.Temple Israel Nursery and Day Care: Open, No early drop off School starts at 9:00The Albany Academies (AA & AAG): ClosedThe Beagle School: Delayed, No AM Pre-K, No AM Pre-School, All AM programs closedThe Downtown School: Delayed 2 HrsThe Hyde Collection: Delayed 2 HrsThe Kid's Place Preschool: Delayed 1 HrThe King's School: ClosedTiny Tots Early Learning Center: Closed, No AM Pre-School, Open for PM PreschoolTri-Village Nursery School: ClosedTroy City SD: Delayed 2 HrsTroy Prep: Delayed 2 HrsTwin Valley Elementary School: Delayed 2 HrsTwin Valley Middle High School: Delayed 2 HrsUMC Daycare Norton Hill: Delayed 1 Hr, No AM Pre-KUnlimited Potential, Inc: Delayed 1 HrUpstate Transit: Delayed 2 HrsVictory Christian Academy: ClosedVoorheesville CSD: Delayed 2 Hrs, No AM BOCES, No BreakfastWSWHE BOCES - Gick Road: Delayed 2 Hrs, 12 moth offices 2 hour delayWWAARC—Albany & Queensbury: Delayed 1 Hr, Staff Report Regular TimeWaldorf School (Saratoga Springs): Delayed 2 Hrs, No 2 day PreKWarren Street Academy - The Bridge: Delayed 2 Hrs, No BreakfastWashington County Nutrition Program: Closed, No Senior Meal Sites ; No Home Delivered MealsWaterford-Halfmoon UFSD: Delayed 2 Hrs, No BreakfastWatervliet City SD: Delayed 2 HrsWebutuck (Northeast) CSD: Delayed 2 HrsWesley Evergreen Adult Day Program: Delayed 2 HrsWest Canada Valley CSD: ClosedWheelerville UFSD: ClosedWhispering Pines (Cobleskill): ClosedWhispering Pines - Schoharie UPK: ClosedWhispering Pines Pre Sc (Amsterdam): Delayed 2 Hrs, No AM Pre-KWhispering Pines Pre-sch (Delanson): ClosedWhispering Pines Presch - Boulevard: Delayed 2 Hrs, No AM Pre-KWhispering Pines Preschool at Meco: Delayed 2 Hrs, No AM Pre-KWilton Baptist Academy: Delayed 2 Hrs, No AM KWindham-Ashland-Jewett CSD: ClosedWonderland Nursery School: ClosedWoodland Hill Montessori School: Delayed 2 Hrs, Delayed 2 hours . No early care. No toddler AM session, delayed 2 hours. No early care. No toddler AM sessionWorcester CSD: ClosedWynantskill UFSD: Delayed 2 HrsYMCA (Bethlehem): Open, No Morning ClassesYMCA (East Greenbush): Open, No Morning Classes, Child Watch opens at 9am, Before School Care 6:45amYMCA (Greater Glenville): Open, No AM classes before noon.. No babysitting before noon.YMCA (Guilderland): Open, No AM Pre-School, No Morning Classes, No AM branch childcareYMCA (Schenectady): Open, No Morning Classes, Child Watch Closed for AMYMCA (Troy): Open, No Morning Classes, Child Watch opens at 9amYMCA Southern Saratoga: Open, No Morning ClassesYWCA of Schenectady Children's Ctrs: Delayed, YWCA child care @SCCC delay Until 8am. WA site delayed Until 9amYWCA of the Greater Capital Region: Delayed 2 Hrs

‘Baby Jax’ makes progress after marrow transplant

recommend

‘Baby Jax’ makes progress after marrow transplant

A Johnstown baby has beaten medical odds and is responding positively to an experimental treatment t
‘Baby Jax’ makes progress  after marrow transplant
Jackson Baldwin, also known as Baby Jax, is shown around the time of his birthday in August of this year.

A Johnstown baby has beaten medical odds and is responding positively to an experimental treatment to fight the rare, often-fatal disease that causes his skin to blister on contact.

Jackson Baldwin, also known as Baby Jax, appears to have fully accepted genetically compatible bone marrow and stem cell transplants and is finding that his skin is able to heal better and does not blister as often.

“The transplants worked. Jackson’s body has accepted it,” said his mother, Jessica Valik, 22. The boy is now home in Johnstown with his mother, having been released early from the hospital.

Jackson, who turned 1 year old Aug. 20, is one of 23 children to undergo the experimental treatment for epidermolysis bullosa. Approximately five of the children died during the pre-transplant process, which requires intensive radiation and chemotherapy treatments. The treatments kill off the recipient’s white blood cells and give the transplanted material a better chance to take hold, but also makes the recipient more prone to infection.

Jackson underwent the transplants about 100 days ago at the University of Minnesota Amplatz Children’s Hospital, the only facility in the United States offering the treatment.

Before the treatment, Jackson wore thick bandages from head to toe. The bandages cushioned his body from contact, which would cause layers of his skin to separate and result in intense pain. They also absorbed fluids that wept from the blisters and helped prevent infection. Valik said she spent thousands of dollars a month on bandages.

Now, half of his skin is free of bandages. And perhaps most important, the soft tissue inside his body, including the skin inside his mouth and his esophagus, is starting to heal, his mother said.

“I am seeing portions of his skin I was never able to see before,” she said. “He can experience new things others would take for granted. It does not hurt him anymore and he can play with toys.”

For the first time in his life, he can eat solid food, although sparingly. He is still being fed through a tube in his stomach, as solid food can cause blisters to his mouth, esophagus and stomach.

“His mouth is much better, he still gets a blisters now and then. But now he can take two spoons of baby food,” Valik said.

Her son, she discovered, also has a sweet tooth. “He likes the yogurt better than actual baby food. It is a struggle to get him to eat regular food,” she said with a laugh.

talking, walking

Another joy for them both is that Jackson is starting to talk and walk. He has been delayed in development due to the disease, which robs him of his strength and requires powerful pain medications all the time.

“Before, his life consisted of getting pain medications and formula and sleeping 20 hours a day. He could not do much, he could not play and be a normal baby,” Valik said. “Now he is up to 12 to 16 hours a day and is able to interact. He said ‘momma,’ he blows kisses and laughs.” His pain medications have been cut in half.

Three weeks ago, Jackson took his first steps. “It is very new,” she said, again with another happy laugh in her voice.

Jackson is not cured — there is no cure for epidermolysis bullosa — but the treatment will help him live as normal as life as possible, Valik said.

Mom and baby will travel back to Minnesota next week for some follow-up care and a booster treatment program. Depending on how Jackson reacts, his doctors could discharge him permanently from the program, allowing him to come home to live, she said. “The doctors are completely pleased with Jackson’s progress.”

His progress is so rapid that doctors are calling it historic for the program, Valik said. She had thought his recovery would take up to a year, and that she’d have to live in Minnesota during this period.

Still, the family is not completely concern-free. Valik and New York state Medicaid are still trying to resolve what costs of Jackson’s post-recovery treatment to cover. Currently, Medicaid is not paying for all the medications he must take, including one that costs $1,000 a month. Nor will Medicaid cover her expenses when she travels to Minnesota for Jackson’s follow-up care; he must visit the doctor five more times during the year. As such, she and her family are continuing fund raising efforts. They are accepting donations at: http://helpjackson.org/jacksons-blog.

View Comments
Hide Comments
You have 0 articles 1 articles 2 articles 3 articles 4 articles 5 articles 6 articles 7 articles remaining of Daily Gazette free premium content.

You have reached your monthly premium content limit.

Continue to enjoy Daily Gazette premium content by becoming a subscriber.
Already a subscriber? Log In